Linear Scleroderma, En Coup De Sabre - My Story
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- Опубліковано 22 сер 2024
- Linear Scleroderma, En Coup De Sabre, Autoimmune Disease. In this video, I share my experience of discovery, diagnosis, and treatment of my autoimmune disease.
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I pray for everyone that the progression is halted. Let's keep each other in our prayers for such a crappy disease.
I have the same illness and i have been trying to find other people like us but is very difficult. Ty for your explanation, it was the only video i found about this, very nice
Glad I could help! That's the reason I made this. Best of luck to you!
Bro my sister have same problem but I never saw another guy who have same problem
I have similar condition on my left side of forehead, upper lips, medial portion of my eye. All in left side.
From Nepal 🇳🇵 and I have same problem on my forhead
I am from india . I have same problem since last 4 year
I just got diagnosed today. I'm 35. This is so crazy to me. Thanks for your story. I wasn't sure where to go for authentic information from an actual person.
Wow, today?! Well I’m sorry that must be a lot to process- glad I could provide some information. If you have any questions let me know! I wish you the best. Everything will be okay! ❤️❤️
Thankyou for your video. My son is diagnosed with coup de sabre recently (2 weeks) he is 5 years. The doctors suggered us to start the treatment (Metroxate injection and cortisone) very fast to reduce all the complications and because he is in a stade of inflammation . We are very scared about the treatment but we have faith in the doctor she is specialise in autoimmune disease. He got his first injection of metroxate, for now no indesirable effect 🙏🏼. My husband and i read a lot and talked with a lot of doctors mostly recommend the metroxate and cortisone. They say it is an international protocol. I happy to hear from you that having a healthy diet could help. We already start to make him eat a lot of vegetables , fruits , mostly mediterranean diet. Your video confort us . ( From a dad and mom looking for answers about the disease from 🇨🇦 ) Merci beaucoup 🙏🏼
I'm so happy to hear that you found some comfort in my video! Sounds like you have addressed the issue early, that's very promising! Everything is manageable. It's a weird disease, but it stopped after a while for me, and I hardly ever think about it anymore. It certainly doesn't impact my life in any way now. Also, people barely notice the discoloration on my forehead, especially if I spend some time in the sun, it tans out evenly. I usually put a higher number sunblock on the dark area, and a lighter number sunblock on the rest of my face. That's just a trick I've used over the years, but even so, it's hardly noticeable. I wish you all the best!
Frank The Zombie merci , thankyou for the tip. I will do that for my son. merci beaucoup. Have a great sunday :)
Wish your son doing good and healthy now, sorry to bother you, my daughter also 5 years old and she is diagnosed with morphea, could you please share your experience and dos and dont to recover the child, it would be really helpful for me and my family, we are worrying a alot, if you want share your story, please ping here, I will share my mail ID.. thanks in advance..
Hi there!
I have suffered from the same disease for approximately 7 or 8 years. I remember that my first impression upon noticing that bump on my forehead was one of great concern; And, to this day, I think it has been getting a lot worse. Luckily, and for my self-esteem which, by the way, it is on the ground, no one has noticed it nor has they told me anything about it.
This condition has literally destroyed my life. I have been to several doctors, and none have been able to come up with a possible solution; and what's more, I don't think they know at all about this type of scleroderma.
This disease is so rare, that I have only seen a couple of people with this problem in the forehead when I have been on the street or in different situations. And I've seen it more in women. In the case of men, I only noticed it in 3 boys.
I congratulate you for making known about this rare disease, and all that it entails for the person who suffers from it.
Greetings from Chile 🇨🇱
I also have this but mine is very noticeable I need help
i have had ECDS since i was a teen and i just recently had surgery for fat grafting, it really helped with the appearance and gave me confidence to leave the house without a hat. unfortunately it did creep into the scalp but a few more surgeries and it should be fine. its shit to have a rare disease that you can't explain but videos like this makes you know that you're not alone.. a maxillofacial surgeon will do the procedure.. i urge people to reclaim there life back and get it done
Thank you for sharing, very insightful! I don't think I've seen a whole lot of comments on here from people who have had surgical intervention. I would encourage you to post a video talking about your experience. You could add to the conversation in a very meaningful way that would likely be heard by many more people. I just wrote out my thoughts on paper and edited out my pauses later to make it more concise, my video isn't super great, but it contributes enough. You should go for it!
thats great man, iam looking to do that too. Did you ever have any line vertical lines in forhead-head region? Or just hairline.
Asking for myself really cause if you look up the movie splice or look close at my account picture you cans see i have dead center very vertical line running from top of my forehead to the bottom of it. You can feel running your fingers across. But hasn't got worse sense i got it back 2013.
Feels okay knowing people out there going through the same thing and are taking steps to get it cleared up as much as they possibly can. Hope the best for you all who come across this!
Do you have a twitter oj? Im suffering from the same issues it would be cool to have someone going thorough it because i will go in soon to have some fat grafting done to my mid forhead.
Let me know🤙
Do you have twitter or anything
I have ECDS too! I am so comforted seeing your video. It is truly crazy how similar my story is to yours. I was also diagnosed in 6th grade after getting hit in the head by a basketball and then presumably having a "bruise" that never went away. I started taking methotrexate in 7th grade. They thought my coup de sabre was quiet for a long time but now at the ripe old age of 23 they think it may be active again and expanding into my scalp.
I totally related when you said you felt a sort of pressure in the area.
It is cool to hear your experience because I have never met someone else with ECDS. Apparently it may be as rare as 1/100,000. I'll definitely be watching the documentaries you recommended.
Thank you for sharing! It's wild how similar our experiences are. We thought I had a weird bruise, and a weird sunburn, and kind of just didn't pay much attention to it until it just never went away. I wonder if I hadn't been hit in the face if I never would have had it manifest at all. I'm sorry to hear you think it is expanding. The little spot I have on my cheek from popping a blackhead...welllll from a certain angle, it looks like I have some fat loss underneath in my cheek now, it's incredibly subtle, and I asked a Dermatologist about it. They didn't think it was related, but I'm not so sure. Who knows? But I didn't want to take any more meds for it if it doesn't affect my day-to-day. I hope your body stabilizes and I'm so glad to hear about your story. :)
I also have ECDS, I never knew it was THAt rare.
I’m 29 years old and just realized today this is what I have. Having people tell me I have dirt on my forehead or asking if it’s Ash Wednesday (on days that aren’t even Wednesday’s) has always been something I hated! Feels nice to know this is something I’m not alone in!
Paige! YES! I have had so many people over the years tell me I had some dirt on my forehead, or to wipe my face, 'there's something on it.' Even now, if the lighting is just so, people who I've known for years, will say it for the first time. Now it just cracks me up. Glad you are now in the know. Thanks for reaching out!
I’ve also repeatedly listened to peoples comments on my forehead, and as a child with scleroderma, this affected me a lot. I’m almost 22 now and even though I feel self conscious about my appearance it feels good to know that there are people who understand me.
Thank you!!! I had a brown streak on my forehead just like you and went to the dermatologist and told them I thought I had en coup de sabre and first they looked at me like I was crazy, but after the exam and blood work, I did. I would've waited much longer and went to numerous doctors like you had to if I hadn't seen your video. Thank you again! BTW, I am 56. So if anyone older reads this, it can happen at any age, though it mostly happens in childhood.
WOW! I’m so glad you got answers fast! Thank you for sharing your story with me, I’m happy I could provide some help.
Hi Judy, I'm 51 and I've noticed my coup de sabre for about a little over a year now... I hope that this goes away on its own : (
Judy Gilmore Hi. My local gp said to me , it's because of ageing. I am 36. No standard doctor thinks much of what I have on my forehead. They just think I'm crazy. 🤨 I have ask the Doc to refer me to Dermatologist. So now waiting for an appointment. I'm super nervous for my diagnoses but trying not to be. My daughter currently saw a Dermatologist for her diagnosis of Vitiligo. That Dermatologist suggested that it could not be Linear scleroderma because of my age. So I'm really anxious to get to the bottom of it. I wish you the best of luck, and hope yours goes away.
I will be 58 in October, I started noticing mine forming about 3 years ago. It keeps getting wider but not longer, if that makes sense. When I was a kid, I got hit in the forehead pretty hard with a plastic bowling pin. It left a scar, but I never noticed an indention way back then.
I have the same disease in the exact same spot and in the exact amount as you do. Cam across this video to know more about it. It feels relaxing and awkward at the same time to learn that I am not alone. There are more like me. 😅 Thanks for sharing your experience
I have the same disease! It started when I was very young, around 5. I remember trying to piggy back someone when I was super young, and fell face forward on the floor. I’m not sure if this is the cause but eventually, after a few months my family started realizing that my forehead had a dent and slightly a different skin color. Over the years my parents started understanding more and more about the disease and found a doctor who knew how to slow down the symptoms. One of the doctors they found even decided to write a book on how to cure/slow it down. I was still young at the time and didn’t know what was happening. I had to take several different ways on how to take my medications and find which one was best for me. The dent spreads down my forehead to my nose, and right next to it there’s a slight lump that spreads down to my eye brow. It’s so hard to live with this condition with people asking what happened and taking so many meds to slow it down. I am very thankful that I have a doctor who can help. I’m so glad I came across this video and see other people’s stories.
Thanks for sharing! Yes, oddly trauma seems to activate the disease. I've heard that from several people. Glad you found my video and thanks for contributing your story!
Hi! Thanks for your video, is very hard to find this kind of info from another patient! I started loosing hair in 2012, I had a purple line in my forehead, on the left side. No one knew what it was. On 2021, an oftalmologist noticed my left eye does not produce tears on its own, so she reffered me to a reumathologist. She saw me an diagnosed me. I have MCTD,and linear morphea in coup de sabre, from the center of my scalp, goes down on my left eye (it almost completely killed my lacrimal glands on the left eye) and has affected my sinus and teeth. My treatment is methotrexate permanently and i’ve had a few rounds of prednisone. It’s finally inactive, but they kept me on a low weekly dose of methotrexate. I live in Chile, thanks again for sharing all this! ❤️❤️
How very interesting the ways in which it can affect the body. Thank you so much for sharing your story. I am glad to hear it's gone inactive for you.
Olá! Você poderia me dizer por quanto tempo leva de tratamento para ficar inativa ?
@@cuscuzgame5481hey! Hope you’re ok! 😊 it took almost a year, with prednisone and methotrexate.
@@pauladiaz9587thank you
I was diagnosed with Linear scleroderma about 3 years ago, I'm 26 now, particularly En coup de sabre subtype, just like yours. My lesion started as a tiny small dentation in my forehead that was also a bit shiny. It was barely noticeable. after 3 years it has gotten bigger and much more noticeable, however, thankfully, it still is superficial and hasn't gotten deeper. I am a medical doctor and I was constantly anxious about developing the more severe form in CREST or Systemic sclerosis especially I always had heartburn which could also manifest as part of systemic scleroderma. I have only used topical steroids and tacrolimus, both are well prescribed topical immunosuppressive medications used in many dermatological diseases. But honestly I haven't seen much of improvement other than insane itchiness and irritation. I have thought about using more systemic immunosuppressives whether Steroids or MTX. But for me the benefits are less than the long term damage caused by these medications. I have noticed from my experience that the whether might play some part in triggering the activity of the disease. I used to live in Europe where I was finishing my medical degree and I always noticed that the lesion was always dormant during my time there. In the summer, however, when I would go back to Saudi Arabia my home town where temperatures normally hit 40-45C I start seeing progression in the lesion. I wonder if anyone else experience similar situation.
Anyway thanks man for sharing your experience with this rare disease. Autoimmunity, just like you, also run in my family to a certain degree. My brothers all have some sort of autoimmune disease, my little brother has Diabetic type 1 and my other brother suffers from psoriasis. I have read quite a bit about the efficiency of UV light therapy and I wonder if anyone else has tried it and have seen some improvement.
Not much really known or studied about this particular disease, definitely not by doctors taking into account its rarity and the limited treatment options. So it was really good to learn from someone who has lived this experience for years. So thanks again for sharing, cheers.
Thank you so very much for sharing your story in such detail. I bet others will benefit from your experiences!
Abdo, I lived in Miami for 7 years before returning to Toronto and I wonder if that is what started this. Interesting that you mention the weather as a possible factor. I have hyperthyroidism and wonder if that has something to do with this...
Thanks guys for sharing your experiences, I have same condition my doctor had prescribed tacrolimus .1/.2 ointment to apply it was itchy.. other option I was given was uv light therapy and fat grafting on the lesion.
I'm afraid to go with uv and fat grafting seems medically unnecessary
@Ravi kumar
Are you from india?
r u from india?
I was diagnosed with linear/ localized scleroderma at 2 years old but was symptomatic long before. I'm the youngest person to be diagnosed. My en coupe de sabre doesn't run down the center of my face, it runs from the corner of my eye, over my skull and down the back of my neck causing extensive damage. This disease is absolutely crazy. It does what it wants. It damages what it wants. I have morphea lesions that run so deep, they have caused disfigurement.
My question to you and anyone who is suffering from this - do you get headaches on a regular basis?? Migraine like headaches? I've been suffering from chronic migraines since the disease began attacking the right side of my head. They've ruined my life. So has this disease.
Thank you for doing this video. I don't take photos. I've been bullied and made fun of because of the hair loss I've experienced. And I've even been told to cover myself up. Again, thank you for sharing your story. You're a handsome guy!! I pray this doesn't worsen for you. A friend ended up having a few surgeries because she couldn't close her eye.
God Bless!!
Hello! Thank you for sharing, I’m sorry it’s been such a struggle. 😓
In high school I do remember having headaches, but they felt like regular headaches. Localized to the front of my head/sinuses. Hard to tell if it was from LS or not. Most likely was. Again, thank you for sharing, I pray for your healing.
Thanks for your video. I am self conscious and sensitive when it comes to my face. Having a tiny scar on my face is a nightmare. But then I was diagnosed with linear scleroderma too about 3 weeks ago. Mine is about 4cm long and 1cm wide in the middle of my forehead in V shape, which turned me to be insecure and afraid to go out. I also heard that this is a very rare Autoimmune disease. I hope we can get rid of this ''scar''/disease soon.
I hope all goes well mine is in remission
It’s been in remission for 5 years
I am going to a Dermatologist for a diagnosis, I very much nervous but keeping positive.
I can imagine how you would feel. At the moment what I am experiencing is slightly unnoticeable unless I mention it to someone. Mine is on my forehead. I am just curious, did the dermatologist give you any medication for it. Do you get headaches or such from it. Id love to know..I truly wish the best of all luck. Hope you get better soon.
Hi, I also have the same illness like you. It's been few years I'm trying to heal it.
I wish you well on your journey!
My son was just diagnosed with this a week ago. My wife and I have been discussing our options. He is 12y/o and is very active in sports. The Dr. has explained the IV treatment of steroids and the same chemo treatment that you had. The idea of a otherwise healthy 12y/o boy being bedridden over the weekend is hard to imagine. If this only skin and it could fade away after 6yrs. I’d prefer the latter. Let me know if you would feel comfortable discussing our options over the phone with my wife. Thanks for the video, in it of itself was reassuring.
Thank your for this video! My son was just diagnosed with this and I have CREST syndrome, which is also autoimmune. This was very helpful. We are trying to find him a specialist, the bouncing around or finding one is so hard. I have never found anyone to really help with my condition, I just cope. Frustrating.
YES, it is very frustrating! Keep it up! Keep searching for proper medical care, and take good care of yourself. I wish the best for you and your son!
I have linear scleroderma as well, have had it since I was 4 (I am now 33). I've heard that it doesn't run in the family but you mentioned your son has it and you have CREST syndrome. What have the doctors said about that?
Thank you for your video! It is comforting to know someone else who has en coupe de sabre. I have it a lot worse -- you really can't tell with yours. But like you, autoimmune diseases run in my family. My grandma had celiac/rheumatoid arthritis/lupus and my mom has hashimotos/celiac, my dad had alopecia universalis and I have celiac/en coupe de sabre/undifferentiated connective tissue disease. 2 uncles and 3 cousins died of leukemia/bone cancer. I heard you went to Seattle Children's hospital! I graduated from Overlake School in Redmond. Hope to meet someday if you ever go to those group meets for scleroderma.
WoW, that is certainly a family history! That's a little more involved that mine even- Crazy how genetics affect us so heavily in the disease department. Very cool you are local! I have never been to a meet up, never heard that they existed! No one ever told me :P As far as I know, mine is over with, so I am not seeking any further medical care for that specifically, but I am glad there are support groups out there! Take care of yourself! I wish you good health.
Hello, I know you replied 5 years ago and probably won't see this but maybe you will. I completely agree with you. His is mild and I pray it stays that way. Mine looks completely different and it has done extensive damage. The pain is brutal. I'm sorry you're dealing with this.
In case you do see this, do you suffer from headaches? Migraines?
Thank you so much for posting this. I have never heard anyone talk about the same problem I have. I was hit with a basketball by my friend and like a couple of weeks later I had a bald spot on my scalp. I am very self conscious with it. We are planning to meet with a surgeon when I am older. Thank you so much!!!
Kaydence Hughes thanks for sharing! It’s strange how it’s a trauma initiated disease huh? I always wonder if I hadn’t been hit in the face, would my forehead be normal today? Hard to say, I hope one day soon it doesn’t bother you anymore.
i am also suffering from this desease and the symptom are same as your....now i am living in indian...and in india there is no treatment
Hi Frank, thanks for sharing this. I had LFS when I was 7 and my story is quite similar to yours. The disease progressed for a few years then it stopped, now I'm 31 and it has been stable since then. I am curious about the connection between LS and food so will do some research, I will let you know if I find out anything interesting. Thanks for adding to the community and sharing the videos!
Thanks for commenting! Yes, I am always interested in the connection of food to mind, body, and spirit. Auto-immune disorders I know can be improved greatly by a complimentary diet. My cousin who was eventually diagnosed with Lupus, and terrible migraine headaches, is doing absolutely wonderful now. She cut out processed foods, gluten, and is making a lot of her meals herself. Lots of work, but she looks and feels amazing. I was worried about her for the longest time, but now that cloud has lifted. Glad your condition has subsided! Thanks for sharing!
I got hit in the forehead with a flashlight when I was 8 years old. Shortly after that my linear scleroderma started to appear. I am now 19 years old and still have it. Mine is really indented in, and am looking to get surgery or fillers to make it appear less. The creams never worked for me, just felt oily. It's nice to know I'm not the only one who experienced something like this. Thank you for sharing your story!
Hi Lydia, thank you so much for your comment, how long was it before you were diagnosed with linear scleroderma?
What treatment do you use?
@@carlosrueda5153 I was diagnosed at 9 years old. And I looked for the cream I used to use but my mom said she threw it out years ago. Even when I was using it, it kept getting worse.
@@lydia1226 Thank you very much for your answer, you only used cream? You were not prescribed immunosuppressants Methotrexate, the cream must have been with corticides.
How many years did you apply the cream?
@@carlosrueda5153 I used it for one year. My doctor didn't know much about linear scleroderma so he didn't really know what to do about it. He only gave me the cream and basically said good luck.. I didn't even know there was other stuff I could try till I saw your video and read the comments but I definitely want to look more into it now
@@lydia1226 I have researched a little and there is treatment with U.V.A. radiation, I am told I must use the cream for 5 years, I start with a white spot and no hair, I have applied the cream and the color has improved a little, and new hair has been born.
Hi Michael! Thank you for posting. Every so often I search the interwebs for recent news on LS and en coupe de Sabre. I can’t get a doctor to diagnose me and I’ve had this since I was about 12, I’m 32 now and it started up again (getting deeper and moving down my nose) about 5 years ago or so. You look really good and it’s hardly noticeable. I do relate on the “you have something on your forehead” comments, now it’s pretty bad so only super curious people will ask “what happened to your head?” Can’t wait to try and fix it one day!
Teresa James thanks for commenting. Have you seen a Rheumatologist? All the dermatologists I went to weren’t studying it and sent me to Rheumatology. I hope you can find a doctor that will work for you! I’m so sorry to hear that it started up again for you. I didn’t know that could happen. I mean, I have a new spot on my cheek now but I thought my forehead would always be finished wreaking havoc! UGH! How frustrating. My doctor told me the disease burns itself out after about 7 years. Then it just stops on it’s own. But who knows how confident they are in saying that. I know reducing stress is ESSENTIAL. Stress aggravates it. Eat a bunch of vegetables and fruit/Whole Foods and dive deep into self care. I wonder if 2-3 years ago when my Dad was dying, if that stress activated my autoimmune disease again. Who knows- but take care of yourself. Good to hear from you! 😊
Frank The Zombie so I’ve seen all sorts of different doctors. When I finally got referred to a rheumatologist, he sent me back to a dermatologist for a skin test. By that time I was so frustrated I gave up. I just moved to a new state so I’ll have to start the process over, but this time I’ll be more informed. I also did a blood test with an ANA panel that came back negative. So I guess who knows! More tests I’m sure. Stress is a huge contributor, I believe mine was re triggered after having my wisdom teeth out and a subsequent jaw surgery to repair my lingual nerve that was cut during the wisdom tooth removal. Even more crazy that was also on the same side as my “dent” so possibly related. Maybe I’ll get answers in 2019!
@@86treesaw that's frustrating! Please keep me posted on your journey, I'm curious as to what you end up finding out. I am about to make an appointment with a Rheumatologist myself, we'll see how that goes. Best of luck to you in 2019!
Thanks so much for this video. I've been searching so long for an explanation and this has hit the hammer on the nail.
NEWDAWNNEWDAY you’re welcome 😊
Thank you so much for your video. My daughter who is 18 was diagnosed about a year and a half ago. Hers runs from her forehead down her nose and chin. The area on her nose seems to be active and is indented which I’m so concerned about. She’s been prescribed a non-steroid cream which I hope helps. The information out there is so scary but I love watching your video which gives me hope. I hope my daughter‘s ECDS stops progressing as well.
You're very welcome! Thanks for watching! I'm glad you found some hope in my video :) It IS a weird scary thing, but we are all dealt a different hand in life, all we can do is meet the challenges to the best of our ability. You sound like you're a great supportive parent! She's lucky to have you.
Oh my God. Thank you so much for this video. I have a bad case, it looks like a Lesion on my forehead. I am going to Columbia Presbyterian to get some advice. I had this way too long I am now 50 years old
Glad you are getting it checked out. Knowledge is power.
good to see your video. i hope to do mine someday when i have the scar on my forehead go away. I have had fat grafting that dissolved within one month...now considering going for derma fillers. Thank you for sharing
Olusegun Martins thank you for your comment! I would love to watch your video! Please send me a link when you do it. I wish you luck with the fillers, God bless you!
Please make a video I would love to watch it
Thank you so much for your video and explanation. I also have coup de sable recently diagnosed (after several different specialists doctor appointments) and I'm absolutely scared about the progression and how effective the treatment will be. I just have a cream for my forehead to use and like when you were at school, I use it several times a day but it's quite itchy and uncomfortable to wear. In my case this "forehead depression" appeared when one night 2 years ago I woke up to get some water and I was so sleepy I ran into a half opened door (and I hit myself in the forehead with the edge of the door). I thought it would dissapear but it didn't. I'm truly scared but seeing people sharing their stories it's comforting. Thank you all and wish you all the luck! ❤
I have En Coup de Sabre and I’ve been on methotrexate for over 7 years now and it sucks (2 years injection, 5 years pills) and I’ve had 2 plastic surgeries! I’m also on CellCept and I might have to add another med to curb it progressing. It’s nice to relate to someone. I go to Mayo Clinic. You can reach out to me anytime, thanks for sharing!
Kaycee McDonald thanks for sharing! May I ask what your plastic surgery entailed? Are they planning on keeping you on medications for a while longer? Would you say your experience with the Mayo Clinic has been positive? I look forward to hearing from you. 😊
Madam whether your scar vanished with the plastic surgery? Did it help u
Hi! Do you use any special lotion?
my little niece was recently diagnosed.
How did the methotrexate effect you?
Hi.. I have the same condition and I am planning to get either fillers or plastic surgery done. Can you tell me pros and cons of both and is your mark gone? Please reply I really need to hear from you
I was 5 years old when I first went to the doctor with symptoms. Unfortunately my journey to a diagnosis was very difficult. The doctors I was seeing did not understand what was going on. It took years to get a diagnosis. I also suffered from a severe case affecting my brain and had seizures as a child. For many years, I was treated like a Guinea pig until my parents and I gave up on experimental treatments. I am currently on meds that have helped stabilize my condition. Now at almost 22 years old, I am noticing a second indentation on my forehead and feeling overwhelmed. I’m glad I found this video with a community of people going though similar things. Now I’m considering seeking out treatment for s reduction in scaring. If anyone has any advice, please reach out.
Thank you for sharing, I'm sorry it's been so hard.
It is a rare immune disease. The affected person must go to the doctor because the problem of this disease is developing, and the doctor will prescribe a medicine for you to raise your immunity, such as: Glutana +vit c
Also, depending on your personal situation... Please do not leave the topic and go and calm down
You must go to an experienced doctor to diagnose him correctly so that the matter does not get worse
Thank you for sharing, it was comforting. Lost hair on top of my head where it began which runs to my forehead. Similar story of searching for that right doctor. UV Light therapy along with chloroquine helped getting some of my hair back but it only slowed it down. My doctor and I thought we stopped it but unfortunately, it started progressing again. It's more than 7 years now and hoping it will stop. I heard as you get older it should stop. Yours looks better! Wishing luck to everyone with this disease.
Thanks so much for posting this video. This helped me and definitely comforted me knowing that it slowly disappeared for you. I just got back from the Dermatologist. When I was pregnant I got a dark spot on my forehead. Now, 18 years later, it has returned but there is an indentation and rough skin that concerned me. The Dr. said that it might be Morphea or, from what I'm learning through your post, Linear Scleroderma. Mine looks just like yours, minus the under the lip pigmentation. I will monitor it and HOPE that it just goes away because the doc said that I'd have to start the same meds that you described. Luckily, I'm vegetarian so I will research more about the benefits of certain foods in relation to this issue. Love people like you who post important info that can help others xoxo
I am thrilled my video gave you some comfort! Thank you for sharing your story. A note about monitoring your indentation, my Dad used clear plastic overhead projector paper that he cut into strips and laid over my forehead with tape, then he used a micrometer to measure the distance from the valley of the indentation to the strip that mimicked where my forehead should have been. The micrometer measured distance to 6+ decimal places, very fine measurements. If you can do something like that, and record it, it would give you a better idea than just looking in the mirror. I believe we took measurements of my indentation every month at least. The progression is very slow and makes it hard to tell that anything is happening until it has gotten much worse. My doctor at the time was using measuring tape like a seamstress would use...so my Dad who was a truck driver, had a far more clinical way of measuring and tracking the progression than my doctor! Pretty crazy! Yeesh. The medication totally sucks- but it most likely slowed the disease's progression for me. I am glad you are seeking medical care, I wish you all the best on your journey!
@@yakster87 Thanks for that great tip. My Dad was a mechanic so I'm sure that he can help me out similar to your Dad! I'm dying to know how you're doing now?? My coup de sabre looks identical to yours and it is really dry and thin skinned in that area too.
@@kathleenh.7956 I am doing well to my knowledge! When I first posted that video I was a little concerned about a hyper pigmented area on my cheek that had developed from popping a blackhead...got it checked out and the doctors seemed to think it wasn't related to LS. I got it burned off with liquid nitrogen at a Dermatologist office. Other than that scare, I haven't had anything else come up since I was a kid. At around the same time as my LS was starting, I developed bad acid reflux/heartburn. They are most likely related, but my Seattle Children's Hospital Rheumatologist couldn't definitively say. I take 20mg Omeprazole once a day in the morning before I eat anything. I've been doing that for 15+ years. It's a PPI that blocks acid production in the stomach to prevent acid reflux. I get screened every 3 years for esophagus cancer to be safe. I have only mild damage at the base of my esophagus, which is great news. I still plan on getting screened to make sure it does not get worse, but the Omeprazole helps a lot. Other than that, I'm in good health!
@@yakster87 sounds like you've been through a lot! Tell me about how your eating habits have changed, as you mention in the video. I am vegetarian and find that not eating meat has changed my acid reflux big time and my overall general health is fantastic compared to earlier years.
@@kathleenh.7956 I mostly try to avoid highly processed foods, and fried foods. I admit I have fallen off the wagon in recent years. I've added back in a few meats that were giving me problems before, and occasionally I may have a french fry. For a long time, potatoes were a big problem for me. Before Covid, I was getting a fresh juice and a wheat grass shot almost every day after work. Sadly the juice shop by my house went out of business from the pandemic closures. I make myself fresh smoothies when I can. Trying to up vegetable content was something I was better at before Covid. Most of my habits have been changed, and with that I've been lazy with my healthy habits. Avoiding excess sugars/processed/"food-like" items is my main priority. Greens and what I like to call, "God's food" are what I strive to put in my body.
I was diagnosed with linear scleroderma when I was 4 and I'm about to turn 16. Your story is alot similar to mine. My mark showed up and my mum noticed it cause I use to scrap my legs when climbing in and out of the pool then the doctors didn't know what it was until 6 months later I was diagnosed with scleroderma. My scleroderma is on my foot/leg and stomach and on my right side. I just got taken of methortexate a few months ago and I relate to the sickness that it gave me on a whole other level.
Thanks for sharing! I'm glad you got to stop taking methotrexate, that's exciting! It's so strange how just a little bit of trauma sends the immune system out of whack! I wish you good health and may you never have to deal with this again!
I take the same meds too!
I have the same I think. My dermatologist called it línea morphea. I saw another dermatologist Recently he called it skin scleroderma and I’m considering methotrexate . Thank for sharing.
Yes, those are other names for it. I wish you luck on your journey! Be well!
Hey I had a surgery last week I had really bad coup de Sabre 80% symmetrical now
I thought it was only me with this problem o would really like to know ur stories I’m from the UK
@@yakster87 I want to know more about this condition as a lot of the doctors in the UK don’t know much about it
@@Qas99 I hope your surgery went well and you heal up! Pretty much everything that I experienced, I talked about in my video. It's a weird autoimmune response that the body has to trauma. Hopefully it is done and over with forever!
@@yakster87 thanks for your response Do you have Instagram that I can follow you on or talk to you
i also have the same disease. luckily my mom caught it when i was younger so we were able to find a dermatologist who could sort of help. most doctors i went to had no idea what it was or what to do. it starts right in a little spot of my hair (which caused a patch of alopecia) and down my forehead through my eyebrow and right on to my nostril. i used some type of cream my doctor prescribed to me and it “burned out” after and it’s been inactive for over ten years now. i’m trying to find some sort of reparative surgery for my nostril. this was quite informative actually because i can never find anyone who was the same illness i do, thanks!
Thank you for your comment! My Mom was the first to notice the dark mark on my forehead too! I first tried a cream as well. Very similar journey. I appreciate you sharing.
hi please tell your cream cobination?
i have this disease
@@ariankaviani1044 hello, i can’t remember the exact cream i used by it was a type of hydrocortisone cream hybrid they used.
Honestly I love your face it's still so beautiful and I didn't notice this till u pointed it out . Your eyes are gorgeous as well. Question about this, does it feel tight or anything?
AWWW Thank you!!!! I sort of lucked out having olive skin, it hides the discoloration a little better. As far as what it feels like...it doesn't really feel like anything. The skin surface turned a little leathery, but just to the touch. It doesn't feel any different to me otherwise. I did used to get bad headaches when it was still active, and I felt like my sinus headaches were a lot more intense. But those have stopped years and years ago. Thanks for your question!
Frank The Zombie thanks for your reply hehe! Wish you the best of luck with everything! Thanks for sharing your story ♥️
Hi! I have linear scleroderma on my scalp since i was 6 years old. Two big spots without hair on them, but happily when i was around 11y old it just stopped growing. I just wanted to mention that in my country they treat it with penicillin shots into muscle. So I believe treatment depends also from the country you live in. One year ago I got lucky and I also developed psoriasis 🤣 thank you for the video as you mentioned things that doctor never said to me :)
Hello! Thank you for sharing!! That is so interesting you were given Penicillin. No one ever mentioned that as an option to me. Do you feel like that helped? It's hard to tell with this disease if medicine affects it, or if it just stops on it's own. I'm sorry to hear you developed Psoriasis. I just watched an interesting Netflix special Zac Efron made where they bathed in the pools in Iceland where the water is filled with minerals. Supposedly it helps people with skin afflictions? Seemed worth investigating. Maybe there is something you could produce in your bathtub that taking a good soak would help? Just a thought, I'm certainly not an expert or a doctor. I do appreciate your input! Thanks again for commenting!
@@yakster87 it was around 20y ago when I had this treatment, I was still a child so my doctor didn't wanted to give me steroids, as I was still growing. I had 1 month of shoots in hospital under supervision and half a year of break and then again. I think now they don't do this anymore as penicillin isn't safe, you easily can get allergic reaction to it (I got it myself). After this my scleroderma just stopped growing. My doctor said that I should watch out to have enough healthy oil in my diet as it affects skin conditions 😅 there is a lot of things which you can do to help yourself and a lot of which you shouldn't do. But the most important is not to stress over everything because this also affects it. There is also some connection with how you eat, doctors say that some diets might help with autoimmune diseases. Thank you for your comment!
@@20Kirika Very interesting! Thanks again for your insights!
Thank you for the video. Was diagnosed yesterday (F29) and have struggled w headaches and migranes since I was a child. Anyone started medication and got rid of this? what types of medication?
Awaiting to be in touch with specialist at my hospital, but feel such a need to understand this. Been ashamed of the white line on my forehead my whole life, such a relieve to understand that it is something, and just not me "being a weirdo".
Methotrexate was the medication I was given. It's an immunosuppressive drug so your body stops attacking itself was my understanding. Thank you for sharing, I hope it stops and you can heal.
This is such an amazing video, thank you so much for posting, Michael!
A couple of years ago I was hit on the forehead with a basketball, I didn’t think much of it then but a small, white patch formed on my forehead, the size of a coin. It didn’t go away and I ignored it, until people started asking what it was and I didn’t have an answer for it!
Fast forward a couple of years later and it’s still a white shiny and depressed scar, I finally got a referral to see a dermatologist and he suspects it’s en coupe de sabre too - I had a skin biopsy today to confirm but my story is very similar to yours!!! I had some cortisone injections on the mark to suppress its growth as my specialist thinks it’s still active.
Thank you again for posting, it’s given me a lot of hope - especially because I was getting really self conscious about my appearance (and make up doesn’t quite cover it up!!)
You're welcome! I'm glad to hear they are taking some steps with your diagnosis. I used to try and cover it up for school pictures when it was a little darker, you're right though, it seems to want to show through makeup. I am going in to see a Rheumatologist about the spot on my cheek, because it is also turning into a crease unfortunately. I hope your treatment goes well!
I was hit with a basketball too and then I was diagnosed
Thank you for your video. I Have same illness, en coup de sabre. Very rare.
You're welcome! Yes, it's rare, but with the internet, I'm glad we can connect :)
I also have this! Thanks for talking about your story. I think it really needs more attention
Mine is really deep and I’m super insecure about it
Same. I had a plastic surgeon do some work on mine. It was deep but now it looks almost as thin as Kylo Ren's scar by his eye but not that thin. It's kinda bad ass.
You’re welcome, I’m sorry it gives you insecurity. This may seem like a silly suggestion, but if you don’t want to get plastic surgery, you could potentially grow your hair and get it cut in a way that gives you bangs, or sweeps across and shadows the area a little? That being said, you are beautiful no matter what, and it’s something unique about your story. If you can come to a place where it doesn’t bother you anymore, that’s awesome. I agree this needs more attention. If you or anyone on here wants to upload a video, I encourage you to do so!
Frank The Zombie thank you for the comment back, I really appreciate it! ❤️
Rob ooh I’ve never thought about plastic surgery! Where did u have it done? Was it expensive?
Of course!!! You're welcome!
Thank you for this video Frank. I found it to be very helpful and I feel a bit less worried about my Linear Scleroderma En Coup De Sabre.
I am a 61 year old woman who fell in the subway in France last September 2019. I fell forward and hit my face and head on concrete. I bruised quite badly but healed at a normal rate after this happened. Several months later, I noticed a linear indentation on my forehead. It is on the left side where I struck my face on the concrete. it begins at my hairline and travels downward about 1 or 2 inches. I never had this linear indentation before. I live in Seattle and am going to see a Rheumatologist at Virginia Mason in 2 weeks. I discussed this first with my Internal Medicine Doctor and he referred me to her. I am wondering if you have any recommendations for a Doctor who specializes in this disorder here in Seattle? I would greatly appreciate your input. thanks again for sharing your amazing story.
Hello Jill! Thank you for sharing, I’m sorry to hear about your accident. Most of my treatment was done through Seattle Children’s hospital as I was under 18 for all of my disease. I did check in with a doctor at UW Medicine Rheumatology on Roosevelt Street in the University district once. I thought I had experienced a flare up but thank God it wasn’t the case. The UW Med doctor had treated other LS patients before I believe. Which is helpful to go to a doctor that has seen LS in real life. Virginia Mason is a good hospital too! I guess if for some reason you feel dissatisfied with them, you could try UW Med. I have only went there that one time a few years ago though, but it was their Rheumatology department. I’m glad my video provided a little comfort! Glad you are seeking medical help, hang in there!
One of my friend was suffering from discoloration of skin of arms and legs. He went to an allopathic doctor and the doctor advised him for CBC test. The report came and the doctor said that you are suffering from Linear Morphea. Allopathic treatment was started but was not much satisfactory as I stopped taking the medicine, it happened again. One day I was surfing for the internet and got to know about Planet Ayurveda. I opened the site, online ordered Ashwagandha, Neem Capsules, etc. I am much better now.
I'm so glad you found some helpful information and a great plan!
Hi, can you share your Ayurveda doc information?
@jagarajsingh plz give true information...
Hello, thank you for the video. I am from the Middle East, and I have the same line. Can I know what are the risks of this disease?
Google may be able to give you a more complete answer, and certainly your doctor. Here is what I know when I last researched it for myself- In some cases, LS or Morphea can develop on other parts of the body, and can disfigure that region pretty severely. The disease can sometimes run it's course and fizzle out after ~5yrs. If LS is on the forehead, it can sometimes run so deep, it can start causing seizures and other cognitive problems. It's kind of rough stuff, but you should certainly seek the medical knowledge and advice of a doctor as soon as possible. Good luck on your journey.
Your doctor should have prescribed Zofran for you, also. I was on Methotrexate injections for quite a while for Lupus and my doc also prescribed Zofran for the stomach issues. It worked pretty good. Not perfect, but better than nothing.
I recently (6 months ago) noticed the top of my skull is concaved and just recently (the last month) it has progressed down my forehead. I see my rheumy in November....I haven't been officially diagnosed with Linear Scleroderma, but I will bet my life that's what it is. 😟
Karmah's Law thanks for your comment. Zofran would have been nice! I think all I got was a pill that suppressed vomiting, which helped me keep the pills down, but did nothing for the sick stomach feeling. Oh well 😔 I’m sorry to hear of your Lupus. Something my cousin found helpful was organic bone broth. You should look into it if that interests you. It gives your body a lot of nutrients. I’m actually considering going to a rheumatologist as well. I hope your forehead calms down and you are able to heal properly. God bless you.
Thank you for sharing! I’m currently discovering I have this condition also. It is located on the side of my head, hairline area. What treatments/medications did you take to slow it down/stop it all together?
Nick B My doctor at Seattle Children’s Hospital in Rheumatology put me on Methotrexate, which is a general immune suppressing drug. That was about 16 years ago, I don’t know if the treatment plan has been updated since then. It did make me feel nauseous. It’s a drug used in chemotherapy I believe. Metallic tasting food was another side effect I experienced. I had the disease for several years before I was diagnosed, and then only really received treatment for about a year. Then it was determined the disease had ran it’s course and I stopped treatment. I wish you the best! Hang in there! Find a good doctor and take care of yourself!
Mine seems to have started after I was in a car accident in 2017. I had a light itchy plaque of skin on my forehead . After I had my son in 2019 , by the end of 2019 it had activated and started moving towards my nose. The first dermatologist had no idea what it was .. it took me downloading Teledoc and fifteen minutes later getting the ECDS diagnosis. The affected area is indented and is hyperpigmented.😩I have rubbed methotrexate on it and taken it in pill form (6 pills Sat) and now dexomethasone (5 pills Sat and Sun ) and a daily dose of Folic Acid. Omg I can’t wait to find a better solution.
I am so sorry, that's rough. Nothing is forever, and this too shall pass. Hang in there, you will reach the other side.
Thank you!!!
Hi Thank you for the wonderful info? Are you under any medications right now? Since how many years it's been with this disease?
Thanks
No medications currently, I only used medications for a year in High School. 2002-2003. I think it was active for about 5-6 years. My doctor said they thought I was okay to stop taking medication.
Hello ! interesting experience you have had with yet another unheard of rare auto immune disease . I was going through major stress at age 37 , and was diagnosed with Dermatomyositis . It was terrible and frightening for the first year .so many awful drugs and reactions . So happy you are better and there is hope through diet . I am suppose to go off gluten , but I have not as yet . I was in a research study to get IVIG . And that is still my treatment for DM . Did you try IVIG . It saved me from Prednisone and methotrexate and Imuran . But I am tired of my monthly 2 days of IV s !!! I am 68. So very interesting your family has a history of Auto Immune disorder's . My own grandmother had Poly myalgia rheumatica, my dad and brother had Parkinsons and Lewie bodies . I do think there is strong evidence also to our chemical environments . MS and Parkinson's especially . Best Of Luck to you . I will try the raw vegan diet . Thank You for telling your story 🙏🏼👍🏼👂🏼🙌🏼👏🏼
30 yrs old Guess what i just had my hair prp done for better hair health and i think that is what triggered it because i never had any trauma other than prp treatment , just this last month felt a dent on my head and the hair is gone from that spot, dermatologist says its morphea i am shocked honesty and have no idea what to do
I’m sorry to hear that. I hope you get good medical care. ❤️
Thank you so much for sharing! It makes me feel less lonely about it... comforting in a way. I was diagnosed when I was 21, I wasn't lucky in the sense that if affected part of my eyebrow where hair no longer grows and mine is much darker (I will tryout the sunscreen tip though).
My question would be, do you feel that area is more sensitive than the rest of your forehead ?
Greetings from Guatemala :-)
Thank you for sharing! At least now, the affected area on my forehead doesn't feel any more sensitive than the rest of my face. I wouldn't notice it at all if not for the discoloration. Well wishes :) -Michael
@Milton Crummie II Interesting
@Milton Crummie II Yeah me too
I got linear scleroderma that made a mark from my nose to all the way over and under my upper lip. It left a weird scar between my nose and upper lip and also caused my front teeth to be unable to grow roots, so now those teeth are very weak. Thanks for sharing!
so fascinating how it affects people differently! Thank you for sharing this!
Thank you for the video! My sister has your same illness (plus CREST syndrome). And I have some signs of systemic scleroderma, even if they are still just mild signs (like hard fingertips and telangectasia that comes and goes). I’m very fascinated and scared by the condition 😊
Riccardo Secci, you’re welcome. Thank you for watching my video. It’s crazy how these genes manifest themselves in our families. My sisters show no signs of autoimmune disease, but the three of us were just asked to donate saliva for a study on autoimmune diseases and siblings. They are specifically looking at how it can affect some children of a family and not others. Interesting stuff, I wish you and your sister the best! God bless! 😊
i also have linear scleroderma on the left side of my forehead, cheek, neck and back
i’ve been so two dermatologists before i got an explanation of the marks on my face and i got treated with hydroxychloroquin but i stopped seeing the dermatologist and after three months i stopped taking it
i recently saw a rheumatologist about it and he said that this was the first time he ever saw it and had only seen it in text books
every doctor i’ve seen always treats it like an interesting science experiment
i’m looking for other treatments for it
i didn’t like the plaquinil because it made me reallly dizzy and nauseous but that it the only treatment my doctor has recommended
does anyone know of any doctors doing any research studies for this near san antonio texas?
Samiam munoz it seems to me that medication that deals with our immune systems have nasty side effects, which sucks. I am going to talk to a Rheumatologist in February.
Hi, thanks for this im seeing my Doc again this week as he didn't know what it was and we put it down to sunburn... been getting headaches around my forehead but no where else so very similar situation. Does the headaches stop if you get medicated?
It’s been so long, I can’t really remember if my headaches stopped when I was on medication…I feel like they stopped after the progression fully stopped, and then aside from perhaps sinus headaches, I really don’t experience any front facing headaches anymore. I’m sorry you’re dealing with that.
Do you have any side effects of taking methotrexate.. please share im bothering about my daughter
I did have side effects, mostly nausea. Lasted a few days after each treatment. I vomited a lot as the dosage went higher. It was tough to endure, but my kidney function and liver function remained normal throughout my treatment.
My daughter have same problem what's its treatment please
You should take her to a doctor. I was prescribed Methotrexate to lower my autoimmune response and slow the progression. I ended with a Rheumatologist as my doctor.
Hola, yo soy de España y tambien tengo coup de sabre
Hola! lo siento, mi español es no bueno...Comprendo poquito.
Hola, yo tmb y no entiendo bien esta enfermedad ... No encuentro ningún caso como el mío ni en internet ni nada ...
@@ekramlouardizemouri5720 bueno... No busques sale todo lo peor. Yo llevo 17 años con la enfermedad y mis secuelas són fisicas
Jésica Orozco mis secuelas tmb son físicas ...hace un año que me lo diagnósticaron pero llevaba años ya con esto ( sin saber que me pasaba ... Los médicos no sabían )... Mis secuelas están en la cara justo en frente- labio...me gustaría hablar contigo por privado si se puede
Hi!!! You look great! I appreciate the video, my niece was recently diagnosed, we are in contact with a rheumatologist and a dermatologist, they do not have much experience with the disease. I wanted to know the medications you took and if you used or use any type of ointment or lotion. thanks!! Stay well!
Hello Marisa! Thanks for reaching out. The first thing I tried was a topical medicated ointment, but it made my skin feel like it was burning and itchy to the point that I would wipe it off halfway through my day. That didn't work for me. Then the doctor said that they couldn't be sure the ointment would actually do anything, it was just a first step they thought they would try. The common thing is prescribing "Methotrexate" which is a chemotherapy drug used to suppress the immune system response. The bummer with that drug, it makes you feel like you have a stomach bug, flu-type symptoms. It makes your taste buds taste food poorly, almost like everything tastes metallic. It was no fun. I took it in tablet form, then injections when I thought the injections may make my stomach less nauseous/vomiting, but it made me feel just as sick. I was at the 4-5ish year mark when I received a diagnosis and started treatment, which at year 7, the disease has usually run it's course. So I couldn't be sure if the Methotrexate was helping or not...Ultimately after about 8 months-1yr of being on the drug, we all decided I should stop taking it. Haven't had any new marks or progression since I was 16, and I'm 32 now. I hope that info helps! You should look for doctors that are knowledgable, who've had patients before, even if it takes some travel. I drove 2hrs into Seattle once or twice a month from the rural town I lived in. It's important to see a good doctor, makes you feel more secure. God Bless!
Hello,
You used any ointment for that?
There are topical medicated ointments that can be prescribed by your doctor if they think it will help, I was eventually put on oral tablets of Methotrexate for about 8-9 months in my case.
Hello Michael, first of all you look great and your video is really helpful. I have scleroderma, my last and most recent area affected is my forehead and I was terrified I was getting en coup de sabre, the name itself terrifies me, but fortunately It didn't grow that way, it's more like a patch. This condition has caused me a lot of pain, I can feel like my skin is breaking up while scleroderma is active, do you remember experiencing any pain while yours was growing? And yes, you are right, trauma can trigger this condition, in my case I pulled some eyebrow hairs and that's how it started 😔 Are you worried of a new lesion showing up?
Nolan, thank YOU for watching! Glad you got something out of it. I’m sorry to hear your Scleroderma is active. The spot on my cheek I am pretty sure is a Scleroderma spot. It is darker and slightly bigger than when I first popped that blackhead a few years ago 😔 but I am hoping it doesn’t get much bigger. I don’t live in fear of new spots because I think it’s strictly affecting my face and I am just going to be careful about how I treat my skin. The only pain I had from my forehead was headaches every now and again. The skin itself never really felt like anything was happening. Odd huh? Something I forgot to mention in the video was that I had acid reflux start about the same time as my Linear Scleroderma. To this day I take Omeprazole, an OTC pill that blocks acid production so I can eat without so much discomfort. I was diagnosed with “Short-Segment Barrett’s Esophagus” And sometimes Scleroderma is regarded as the culprit. Let me know if you have any more questions! God Bless! 😊
Yes, be careful about your skin, make sure you don’t apply any type of pull to it. It is odd to hear you didn’t experience pain on your skin because I do get a lot of it. It’s also interesting that you mention the acid reflux, I was too having problems with my digestive system, I even went to see a gastroenterologist and I was given a treatment with some pills including Omeprazole, although I was not diagnosed with that condition, eventually I got better, still recovering. Oh and my first lesion happened on my arm and the other one on my forehead, I really hope I don’t get any other.
Nolan I hope you don’t either. I’ve been plucking my eyebrows for years and have never had anything show up. But anything with acne seems to be triggering some activity for me. Odd, very odd. It’s a strange disease.
I have dent iny forehead yet to be diagnosed. No pain of dent no nothing. But my gut has been giving me trouble. I'm scared of dent getting bigger.
It's been 3 year and its improving. I have tried everything bt its not decreasing. Can u please help me. Though ur vdo help me to relax that it gone by it self gradually. And i searched linear morphea in google it almost say the same. Now i m deciding to diet. If u can give me a guide line it would be much helpful
By the time I was diagnosed, my disease was half over. I do believe taking Methotrexate (an immuno-suppressant drug) from my Rheumatologist slowed it even more. Seeing a good doctor who has treated the disease before is important. The impression and discoloration does not go away, but treatment can stop it from progressing worse in most cases. Don't worry too much, just seek good medical care. I wish you luck on your journey!
This is happening me now and made feel really bad I’m waiting for my second appointment in the dermatology but here in England I need wait 6 moths to get it. 😞
I'm so sorry to hear that. I know mine was very slow acting if that provides you any comfort. I would be curious if your dermatologist recommends you see a Rheumatologist going forward, that was my experience. I went to Seattle Children's Hospital for the bulk of my care. I was a minor at the time. It's hard, but try not to worry, take care of yourself. Whatever happens, happens. We can only control our reaction and attitude moving forward. Everything will be okay. Listen and take good notes at the doctor's office. You got this! God bless you.
@@yakster87 thank you so much 🙏🏼
@@luisanagutierrez8709 You're welcome! :)
Hi Frank, thank you very much for your video, and your experience, I wanted to ask you, how many years were you applying the cream and what is the name of the cream, the second question, what was the reason for your doctor to start treatment with immunosuppressants? methotrexate
as I understand that linear scleroderma if detected in early stages is much easier to control.
how many years hard does this disease activate in you. thanks for your help.
You're welcome! Thanks for watching! I only applied the cream for a few weeks, it burned and made my skin itch very bad! So I stopped applying it and switched to Methotrexate at the doctor's recommendation that I should try something more powerful. The body essentially is attacking itself, so Methotrexate was prescribed as an immunosuppressant to slow down the progress of the disease. I was already a few years along when I started treatment. I was told after about 7 years, the disease "burns itself out" as the doctor said to me. It's most commonly activated in childhood.
@@yakster87 Hi Frank, how long you were on treatment with methotrexate
@@carlosrueda5153 If I remember correctly, I started with a low dose and worked my way up to a higher dose over the course of 8-12 months. It made me feel real sick for 2 days after I took it, so I decided to stop with the approval of a doctor.
You look fine tho? I’m glad
@@ayaan8877 I’m very blessed to have had such subtle skin damage. Thank you 🙏 grateful 🥲
hi michael my name is arian and i have same deases like you and i have some questions(excuse me for my bad typing)
im 19 and i want to know .
do you have or had a serious treatment?
what should i do?
do you have suggestion i have had this diseases for five years?
i should to say i had some medicine like metotrocsite and hidrocsy colorcin and i had corticosteroid therapy.
and unfortunatly my dermatologist was dead.
plaese anwer me.
The only medical treatment I had was Methotrexate for around 8 months. Since I had the disease for a few years before treatment, I could not tell how much the treatment worked, versus my disease running it's course. Hard to say. It sounds like your treatment is what doctors usually prescribe for auto-immune diseases like this one. You say your Dermatologist is dead? I'm so sorry to hear that! I did most of my treatment under a Rheumatologist, perhaps you can find a new doctor to continue your care? I wish you the best.
i have this near my forehead and left eye because of this i lost half of my eyelashes and i was taking all the medicine and all but i still have mark like a dent and right now its going to be 5 years please help me and tell mw what if it will happen again? i am so scared
and i dont have any family history with this man i dont know what to do but its better than before right now like it was inside before but now its better idk i am assuming or its recovring or something? please help please
@@erakhan4991 Are you seeing a good Rheumatologist? That's the kind of doctor I went to, they knew the most about the disease. Usually the disease stops progressing somewhere around 7 years, but if you were taking immunotherapy treatment for it, it could potentially have slowed or stopped it. It is a scary thing, but you are taking the proper steps and seeking treatment and knowledge. Hang in there! Take the best care of yourself you can. Everything will work itself out.
@@yakster87 thank you so much for your reply. i think its stopped but sometimes i google it and its scares me more. I stopping taking medicines after 2 years or less because it was effect my health alot
@@yakster87 i will see the doctor again because i am scared. i hope its not going to pass to next generation man
I have the same. Its affected my scalp, for head indentation and eyelid, and now eyelashes. ALL in my left side. I am slowly becoming more self conscious and lonely too…
Thank you so much for this vid!! I recently came across several research papers about en coup de Sabre and they said this disease can be associated with serious brain damages, which freaked me out. Do you know anything about the brain damages?
Thanks again for the helpful video!!
Thanks for your comment! I know for myself, the doctor told me if the mark went deeper, it could lead to seizures. Thankfully, mine stopped before it affected my skull. Don't let the information freak you out too bad, everyone is different. It may not progress that far.
Hi, i’m 26 and i have LSC. Except the immunusuppressant treatment which should stop the progression of the disease, have any of you performed hyaluronic acid injections or lipofiling to regain a normal appearance?
If so, what are the side effects?
I have not. I was never bothered enough by the discoloration or indentation to pursue any cosmetic remedies. I was also concerned if the added trauma of surgery could perhaps reignite the disease...I have no idea if that could happen, but the knowledge wouldn't prevent me from worrying it, so I figured it wasn't worth pursuing for me.
I have same now i try homeopathy treatment
I wish you luck on your journey, and I hope you have a good doctor.
Thank you so much for your video! I am 26, and went to the dermatologist after noticing a reddening in the middle of my head right at the hairline accompanied by hair loss. I knew I had a weird dent in my head but never thought anything of it besides making a mental note to never shave my head. 😂She called me back later on after the appointment suggesting that she send me a referral to Northwestern or UW because she thinks I might have linear scleroderma. Still waiting to hear back if insurance will approve an out of network provider, but it's good to see I'm not the only one with this. Kind of frightening thinking how this will progress though...
Hannah, good to hear from you! I went to a UW hospital a year ago for a follow up, we do have some good hospitals here in Seattle :) I hope your insurance will come through for you. Yes, it can be a little scary, but you're doing good by getting things checked out. Don't go too far down the rabbit hole of research on your own, there are lots of variations of Scleroderma that may have nothing to do with you and you'll just end up freaking yourself out over nothing. I've done that before - added stress is not helpful. There are medications that can help, and when you meet with an experienced doctor, they can explain the next best steps for you and you can weigh all your options. I wish you the best on your journey! Keep me posted!
@@yakster87 quick update: it was not approved for me to go out of network. But since there haven't been any physical changes besides the hair loss, they don't see a need to pursue it further. Still makes me wonder how no one noticed the massive dent running down my forehead from age 12 and on...
@@funsized924 ugh, insurance is dumb. I'm glad there are not any more changes that you have noticed. I hope it stays that way!
Frank The Zombie Hannah, your description of the case is what my cousin experiences. Please let me know if you have any updat r
Sir plz tell me what diet can we do for this disease or what home treatment can we do for this 😩it’s been almost 5 years I stop taking methotrexate because it’s so irritating I feel like nausea vomiting so I stopped it 😭I m so afraid about my disease sir please give me some advice
I am so sorry to hear about your suffering. ❤️😔
I cannot offer you any medical advice, you should talk with your doctor and tell them the struggles with nausea you have been experiencing. I was only on Methotrexate for about 8 months before I was getting so nauseous I had to stop. But I was far along in my progression, so I’ll never know how much it helped…
As far as food, a Whole Foods, plant-based diet could offer your body added support in healing. You should have a visit to your doctor though, and ask if it is necessary to take the dose you are currently taking, or if they can dial it down a bit to ease the nausea? Maybe that is beneficial? I do hope you get relief, I still remember how awful I felt after I took my pills. God bless you and your journey, feel free to update me on your progress.
hi, i think i have this too. i will be making an appointment with my doctor soon. i thought that my skull shape was uneven but now the line is darkening. weird how it's attributed to both trauma, and an immune disorder... confusing.
I had En Coup De Sabre as well since August 2017. The darkened skin on my forehead is quite noticeable but thankfully it doesn't creep to my scalp, so I do not experience any hair loss. I went rheumatologist and I had complete blood test to make sure nothing serious. The result showed that I had autoimmune disease but it's life threatening (no lupus, scleroderma, etc). So, it's just a cosmetic problem.
Any suggestion from you @Frank The Zombie to fix this darkened skin on my forehead? I had a chance to go to skin doctor and he gave me cream to be applied on my forehead. However, I found nothing changed. Is plastic surgery the only way to bring back the skin colour to normal? Thank you very much for your attention
Thanks for your comment! I am glad you are not experiencing hair loss, and that you have seen some doctors! I have never tried to change the color of my mark with any prescribed creams or anything. What I do in the summer is apply a high number sunblock, like 75-100 on the area, then I apply a much lower number to the rest of my face, ~30. So then I kind of tan the two areas together so it's not as noticeable. I don't think plastic surgery is an answer to the color, I think that is more used when there is a concaveness to the affected area. If your doctor wants you to use the cream, I would keep using the cream until your doctor re-evaluates how well it is working with you. I wish you luck and good health!
Thank you for the vidEo. I have exactly the same on my forehead, but deeper and darker. thin blue line started appearing when i was 13 and expanded covering half of the forehead. My parents tried everything, western eastern medications and it stopped expanding after 4years. Now i m 33, still have the same dark skin, luckily it never grew anymore. But it would be great to see a dermatologist/rheumatologist. Where would you suggest to go to see a doctor?
Thanks for reaching out! Well, I would just ask around at my local big hospitals if there were any rheumatologists that have worked with LS patients before, and go from there. In Seattle, I recently went to a UW hospital, we also have Swedish and Virginia Mason. But you could find someone close to you I'm sure. They gave me a general blood test to make sure I did not have a generalized autoimmune disorder or Lupus just to be safe, and I did not have it, so that was good! A doctor may want to run a similar test on you, perhaps your condition has run its course, but talking with a doctor is always a good idea. I wish you luck on your search!
when the blue line appeared on your forehead you were immediately diagnosed with localized linear scleroderma, or how long it took to have this diagnosis.
@@carlosrueda5153 once I found a doctor that knew what it was, yes, he diagnosed me with LS or en coup de sabre. It was already a few years into it when I went to the doctor to see what was going on.
Idk if i have this because there’s no color on my forehead but there’s definitely like an indentation idk if yours is soft to the touch but mine is and it’s tender i pressed on it last night and it gave me the biggest pain! My mom recently got diagnosed with lupus /; so idk what’s going on i mean my immune system is pretty good and i don’t get headaches often so idk I’m scared cuz why do i have a little indent on my forehead.-.
The best thing to do is go to a doctor and get a professional opinion. My skin in that area was leathery to the touch, and first showed up as darker skin, the indentation followed later. I’m sorry to hear about your Mom’s Lupus. My cousin has Lupus and experienced fewer symptoms after cutting out all processed foods and gluten from her diet. She makes all her meals from scratch, organic ingredients. She is doing really well now. Something to try perhaps? Could potentially help.
@@yakster87 thank u 🥺🥺
I have same problm but after eating lots of medicine and cream i have gained weight then i stop using pls suggest how it will b cure because i an not able to understand ur words carefully pls tell me i will b very thankful to you pls sir
I was prescribed Methotrexate by my Rheumatologist. I took the pills once a week for 8 months until my doctor told me my disease was likely over. I had the disease for years before I was diagnosed. I will never know if it stopped on it’s own, or if the medication slowed it to a stop. I wish you luck, and good health.
How many years was it active for you?
I think it was active 4-5 years...It may have been active a little longer, but I think the majority of the damage was done and over at year 5. I took Methotrexate my Sophomore year of High School and then with my doctor, decided to stop after less than a year on medication. I'll never know if the medication stopped the progression, or if the disease just stopped on it's own timeline. Just glad it stopped! :) Thanks for your question, God Bless.
I too affected this disease 😭
I'm sorry to hear that, I hope you are able to receive some good care!
Hello sir...I got this just now and I have been taking treatment from the doctor...he is saying it takes long time to go from ur forehead... 🥺 Can u please say me that how long did it take for u to go from ur forehead.... please mention exact duration ❤️🥺
~7 years is the average duration, I was properly diagnosed around year 4. So I didn’t start any treatment of steroid creams or methotrexate pills until year 4-5 of having the disease. I only took Methotrexate once a week for 8 months or so before we decided I should stop. I think treatment, even though it was short in the timeline of the disease, helped slow progression. Hard to know because En Coup De Sabre Linear Scleroderma that I had is such a slow acting disease. Hold your head up high! Hang in there! Nothing is forever in this life, and it’s annoying and hard sometimes, but you’ll be okay 👍 ❤️
I was diagnosed a few weeks ago...it's a patch on my chin..very visible...they've given me steriod creams for now. Not doing anything so far . I had a trauma which triggered it off...I burnt my leg severally a couple of years ago and then this appeared and started getting worse . 😥Not much fun .
Thank you for sharing your story. Hang in there!
Hi Christine, can you please share the cream names?
Ok so one is called elcon mometasone furoate I have to apply for 6 weeks apparently
The other is dernovate ointment
Thanks Christine. You're from US rt? Just asking because treatments may differ based on different parts of the world.
Olá gostaria que vc mandasse esse vídeo com legenda sou brasileira e minha filha tem esse diagnóstico. Obg
Olá! Não sei como adicionar legendas, mas escrevi esta resposta no Google Translate. No vídeo, falo sobre ir a um reumatologista para o meu médico. Ela achou que eu deveria tomar o remédio Metotrexato, que é um medicamento imunossupressor. Tomei esse medicamento por 8 meses antes de o médico decidir que minha doença havia terminado. Recebi um diagnóstico tardio, geralmente depois de 5 anos, a doença acaba. Recebi tratamento por volta do 4º ano. Não sei se o tratamento funcionou bem, mas queria experimentar. A medicação me fez sentir náuseas e enjoos por 2 dias a cada vez. Tomei minha medicação uma vez por semana durante 8-9 meses. Eu tinha 11 anos quando minha mãe notou a marca marrom na minha testa. Eu fui atingido no rosto por um brinquedo de sinuca e minha pele começou a reagir. Doença muito estranha. Eu também desenvolvi refluxo ácido ao mesmo tempo. Até hoje tomo omeprazol para refluxo ácido. Não tenho outros sintomas. Ainda bem que não tive outro surto de LS em qualquer parte do meu corpo. Tenho agora 33 anos e gozo de boa saúde. Obrigado por me escrever. Desejo sorte a sua família.
@@yakster87 obg!!! Tudo de melhor pra ti tbm 😙
Did it gradually expand to your head and loses your hair kind of like become scalp? did it effect your eyebrow.
Have you experienced some what like hyperpigmentation on nose?
Luckily no scalp exposed, no hair loss. It never affected my eyebrows. Nothing on my nose. It is very localized to the forehead. I do have a small patch under my lower lip. The under-lower lip patch developed at the same time I noticed the mark start on my forehead. I was hit in the face with a foam pool float in the pool during Summer, and that is when my Mother noticed it all starting when I was around 11 years old.
@@yakster87 Thank you for sharing with meh
Can you please share your diet?
My diet isn't super healthy, or unhealthy. I try to stay away from highly processed foods, including fried foods. Limit sugars, eat organics. I do slip up here and there, but I try to keep focus on fuel for the body that will benefit me the most.
@@yakster87 thanks Frank. I had new other questions in my other chat
Anitha Ram,,,
r u from india?
Have u consulted any doc?
Actually ,i am from india and suffering from same problem.
@@SONUKUMAR-ic6ku No, I am not from India
@@SONUKUMAR-ic6ku did you get any doctor
I saw a dermat yesterday for this and she has prescribed me tacrolimus ointment which is an immunosuppressant and after that she will do fillers if it won’t heal. I haven’t noticed any change in this from last five years but after she diagnosed it as en coup de sabre I started researching about it. I felt really depressed last night I almost wept whole night thinking what if it will grow somewhere on my face in future. I am watching your video in the morning felt quite better. But its terrifying for me. its not that visible if not seen closely but please tell if you have noticed any change in your forehead line since you got this. Please reply I really need help 🥺🥺🥺
Hello! I am so glad you reached out. To answer your question, I have not noticed any progression since I was a teenager. After the initial "7-year" lifespan of this specific illness, I have not seen any new marks anywhere on my body, or the existing mark get any darker, or deeper. It has totally stopped and has never come back. I am almost 34 years old. It is unsettling when you first realize what it is, but please have hope! It doesn't affect my life anymore since I was a kid, and am healthy in all other aspects. I am glad you are seeking medical counsel, and wish you luck on your journey! We just do the best we can, one day at a time. God bless you.
Hi anjali.. Am in your position nw.. Can you please say what is your condition nw?
Have you tried any medication??? Same condition with me my scar is so much visible with deep indentation 🥺🥺🥺🥺@@prakrithisagar7323
i have Morphea and disslexea and anxiety😭😭and I am only 9 but in school I have to get a fredy and I have to eat a tablet called medatrexat and I have to have a nedall every Friday
My cousin who is 14 has the same on her forehead and was informed by the doctor that it will go away and she should go on diet. She went on diet and since the progression stopped, but it’s still in there. Any advice, please?
The actual mark never goes away to my knowledge, it is permanent damage. Stopping the progression is wonderful. As long as it doesn't get worse, you are in good shape. I hope for the best for your cousin!
I'm also have,it's start in 2013 I try to figure out what happened but nothing happened
I see more than doctors but no one tell me the problem
I end up given
I wanna know if someone fix it
I would seek medical advice from a Rheumatologist who has had LS patients before. Someone who is familiar with autoimmune diseases. Best of luck to you!
Hello. I have esclerodermia coup de sable too, since I was 7.i would like to talk to you.
Hello! What's on your mind?
Hi, Luis.
Where are you from?
I have it on my forehead and it progressed down my face (cheek, under my lip, chin, and jaw area). Your story sounds so much like mine! I noticed it the day I went swimming at the public pool. My mom thought it was a sun burn. Over the years the exact mark my face has is on my tongue. My tastebuds are missing in the shape of a small saber blow. My chin is indented and I have an indented bald spot at the crown of my head. At one point the doctors had me taking actual injections at home. My mom stopped giving it to me bc I said it made me feel funny. I've never seen anyone else with it on their face before and I'm 32 now!
Thank you for sharing Kambraia, I had no idea that it could develop on the tongue! Wow. Do you feel the disease has stopped progressing now?
@@yakster87 well honestly I'm not sure. It looks like its spreading past my jaw line now. I am considering doing regenerative stem cell treatment to see if it works for linear morphea. 🤷🏾♀️ I will keep you posted.
@@kambraiawatts wow, I didn't know that was a treatment that was available! I would be VERY interested to hear the details on that, please keep me posted. Good luck to you!
@@yakster87 Thanks, maybe I'll make a video!
@@kambraiawatts you absolutely should!
I will be 50 in October and was diagnosed with this when i was 11,now have epilepsy its on my scalp and chin back
Is the epilepsy associated with the ecds?
No one said or will say or the doctors I have seen do not know
Thanks for your video. I just noticed an indented line on my forehead from the past month or so. I’ve looked at photos from months ago and nothing. So I think I have en coup de Sabre but finding info on it is hard. Questions I have are does this keep getting worse and bigger and does it ever go away. I heard it hoes into remission and then I read it could be fatal so really confused please help
Just curious, how old are you? Usually LS en coup de sabre starts in childhood. Some sort of injury or impact happens in the affected area, and en coup de sabre shows up shortly after as a sort of, crazy overreactive immune response. Anyhow, I would make an appointment with a Rheumatologist in your area and tell them your concerns. Is there a history of autoimmune diseases in your family? Don't worry too much ahead of time, especially before you even have a diagnosis. Go see a doctor and find some answers. My en coup de sabre stopped after ~5 years and has never gotten any worse. I have never seen it on any other part of my body either. It was weird and unpleasant, but it stopped and life returned to normal. Go check it out and let me know what you find out! God Bless.
Frank The Zombie thank you for you quick reply. I am 52 and really don’t know if I was hit in the head or numbed my head . I know that sounds weird. I have a doctors appointment on Monday and will follow up with you. Seriously your video is the most extensive info I have found so thank you so much. I could care less about a scar I just don’t want it to get worse or affect my liver etc.
@@richardoldaker5729 You're welcome! Yeah, I was curious about what UA-cam had to offer on info about the disease. I mostly found doctors talking at conferences and wanted to see more personal accounts, so I made one! More information is always good with these types of issues, glad you are seeking help from a doctor. Let me know what you find out! Yes, vanity-wise, it's a small thing when compared to your overall health and happiness.
Hi, did you do skin biopsy?
No, no doctor said that I needed one at the time.
Do you feel an actual dent on your forehead? I fear I may be developing linear scleroderma because I have a dent on my forehead that I don't remember having before. I can feel the indent when I run my finger over it and it's very slightly darker than the rest of my skin. Going to see a dermatologist on Friday, ugh.
I'm sorry to say, that sounds exactly like what I experienced. Yes, there was an actual dent that developed slowly over time, only in the darker patch. Good idea to go see a doctor and figure it out. Don't stress about it, you are taking the right steps! All we can do is our best.
Hey. I'm on the same track. I've just noticed it. I am freaking out and have been speaking with a Dermatologist online who has referred it as linear scleroderma. I am going to make an appointment with my doctor tomorrow to get referred to a Dermatologist. I'm worried. My daughter is 10 and currently has an Auto Immune - Vitiligo.
I feel an indent on my forehead too and it’s soft to touch and painful if i press against it /; it’s not colored tho /: I’ve always felt an indent on my forehead but it never felt tender to the touch but it did yesterday so idk :(
Was it recurred after years?
No! Thankfully I have not had any other occurrences.
@@yakster87 great...For me also there is no progress for years...I don't know will it occur again...can you please suggest me some tips for not getting it again...I am worried
does en coup de sabre always present with discolored skin? because for about a year now i've noticed a small dent on the right side of my forehead which im pretty sure i have not had all my life. if i press down on it, it feels like the dent is in the bone. but there's no discoloration in the area at all. it also appeared at a time which coincided with some slight hypertrophy of my corrugator muscles, so im wondering if the dent is somehow due to the overdevelopment of these muscles, or if it's something more pernicious like linear scleroderma. it just strikes me as very odd and bothers me a lot. i cant not notice it and of course i worry all the time that it's going to get worse. the appropriate thing would be to go see the doctor, i know, but ive had such bad experiences with doctors here and their horrendously poor level of care equaled only by the horrendously long wait times to get in to see them (only for them to misdiagnose you or to tell you whatever you have is anxiety and to go home) that ive all but sworn off doctors. think i might just try a long fast.
I always encourage seeking good medical care, I'm sorry your experiences haven't been very good so far. As far as I've known, LS results in a discolored patch of skin over the affected area. The skin gets leathery and hard compared to surrounding "healthy/normal" skin. I am not a doctor...so I think you should keep seeking proper medical care, perhaps a Rheumatologist can look at it for you? There are also a few autoimmune disease blood tests out there that can help narrow down what it may be, if it is in fact an autoimmune disorder. Knowledge is power, and I hope you keep looking for the answer. I know my cousin had a real long rough road to finally getting diagnosed with Lupus. When she finally did, she was relieved she finally had an answer. I wish you luck on your pursuit of health and wellness!
@@yakster87 thanks so much for your reply. you seem like a very nice person. i laughed out loud by the way when you said "im not a pregnant woman". imagine telling a little boy that some condition he has is normal because pregnant women can experience it! anyway, best of luck to you as well!
@@robyn2628 haha, yeah! I remember sitting there thinking, "this guy isn't trying very hard right now..." Glad I could make you laugh!
I also have it since when I was 5 and now I am 17.still it doesn't stop day by day its length is increasing and going much deeper and darker....😞😞.
I'm sorry to hear that Marwa! Do you have a good doctor? are you taking medication?
@@yakster87 yes I have went to many dermatologist but I didn't get any results.still I am going different kind of doctors .but none of them giving me proper solutions .I also have taken injection in that but i didn't see any kind of improvements.
@@meshmesh5755 that is so frustrating. I went to a Rheumatologist and they had only 1 other patient they were treating that had LS, but it was a different form. They were basically guessing on the best way to treat it. Hopefully they will know more about it someday soon.
What is the medicine of linear morphia in forehead? How it can be cured?
The medicine I was prescribed was Methotrexate. This does not cure the disease, it slows down the immune response that perhaps is responsible for making the disease worse. My doctor thought this medication was worth trying, so I tried it. We did not know how effective it was, as it was late in my diagnosis when I first tried Methotrexate.