Medical Stories - Systemic Scleroderma: Lynn's Story

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  • Опубліковано 10 гру 2024

КОМЕНТАРІ • 89

  • @nancydunlop4991
    @nancydunlop4991 Рік тому +85

    I am a a 20 year survivor of Difuse Systemic Scleroderma. I was diagnosed at 29 and will be 50 this year. I have good days and not so good days planning on at least another 20 💖

    • @ajselbehdzet6361
      @ajselbehdzet6361 Рік тому +1

      What is your symptoms did it get involved your organs? Mine is the lungs and I have GERD are you an under any medication

    • @nancydunlop4991
      @nancydunlop4991 Рік тому +1

      @@ajselbehdzet6361 it has affected my heart, lungs, Gastrointestinal system, skin , muscles, tendons and ligaments. I have gerd and am on nexium nothing else for scleroderma related issues.

    • @barryknight
      @barryknight Рік тому

      @@nancydunlop4991 the medicine is so expensive how you survive on that if have raymund and lung problem even worst

    • @nancydunlop4991
      @nancydunlop4991 Рік тому +1

      @@barryknight I am from Canada and my husband has additional prescription coverage through his employer so it’s not too expensive

    • @metappmetapp2507
      @metappmetapp2507 Рік тому +1

      Wow Nancy , how did you do it so far...... My brother has been diagnosed with same and he has been admitted to the hospital as his left side of the heart has been damaged.He is just 38... I am just praying nothing happens.... Can you share what worked for you in terms of medicine and diet.

  • @cindydominick2605
    @cindydominick2605 11 місяців тому +23

    I woke up to swollen fingers in 1981 and it lasted 2 weeks then disappeared for 3 years.In 1984, I woke up and when my feet hit the floor the pain was unbelievable. Swollen everywhere and this lasted a couple months. I started to get ulcers on my fingers and Raynauds kicked in. Doctor after doctor could not diagnose me until one of them ran cold water on my hands. Cleveland Clinic confirmed it was Scleroderma. I had worked in a factory that made dishes and I worked with silica sand. I was told that I could live 5 to 7 years. I'm hear to tell you all that I am 70 now and I've had this more then 40 years. I've been blessed to live this long. It was never easy and it still is not. Many battles along the way. We are all warriors.

    • @terry7344
      @terry7344 6 місяців тому

      was it systemic?

    • @cindydominick2605
      @cindydominick2605 6 місяців тому

      @@terry7344 hi Terry… Yes, I was diagnosed with systemic sclerosis. They found that my lungs were involved and my esophagus. I stayed at the Cleveland clinic for two days and they ran all sorts of tests on me. I left my job 6 months later because my hands started to curl up and the all over body pain was horrible. Time went by, and things progressed rather slowly. They never changed my diagnosis but over the years I think what I have is what they called CREST. What is your diagnosis?

    • @cindydominick2605
      @cindydominick2605 6 місяців тому

      @@terry7344 I replied to you early this morning, but I’m not sure if you got it or not. I was diagnosed with systemic sclerosis. As years went by, I realize it was the crest syndrome.

    • @jenniferrobertson6754
      @jenniferrobertson6754 4 місяці тому +1

      I'm happy to hear your story. Give me hope.

    • @cindydominick2605
      @cindydominick2605 4 місяці тому

      @@jenniferrobertson6754 always have hope.. every day is a new one. Some days you think there’s no more fight left in you, but you will find that you are stronger than you think.

  • @malcomemorris3730
    @malcomemorris3730 4 місяці тому +5

    I was diagnosed with scleroderma in June last year after 12 months of trying to find out what it was, this gives me hope and power that I can power through this at 46

    • @ef4638
      @ef4638 4 місяці тому

      What type? What symptoms do you have?

  • @tamaraheffler-341
    @tamaraheffler-341 10 місяців тому +4

    Hi my name is Tamara and I was diagnosed about 11 yrs ago I've been homeless until 6 months ago and I totally forgot I had this I'm seeing a Dr. On the 20th of February hope she will help me I believe in miracles seeing this on utube has made me see I'm not alone and there is hope...I'm 55 and hope to be here to enjoy my new home for a long while..God bless

  • @chhive
    @chhive Рік тому +12

    I’m praying you will beat this disorder. You’re the storm. My father is diagnosed with this disorder, and I’m hoping he’ll be strong like storm like you.

  • @GaelyneGasson
    @GaelyneGasson Рік тому +22

    Hi Lynn. I'm from Saginaw MI but live in Australia now. I have Sjogren's and have been looking into scleroderma, as my things seem to be progressing. Thank you so very much for sharing your story. I loved hearing your accent and seeing Michigan produce, but more than that, loved seeing that you've got a great doctor taking care of you and looking out for you. You are the storm!!

    • @PhyllisAnderson777
      @PhyllisAnderson777 Рік тому

      Hi @GaelyneGasson - I also have Sjogren’s and have thought the very same thing. This disease has progressed so much, that most days are miserable, in pain, extreme fatigue, and many organs affected. Thank you for your comment.

    • @deborahcotton9765
      @deborahcotton9765 Рік тому

      I found out in 2022 that I have Sjogren's. This year, I found out I have Scleroderma Sine Scleroderma as primary and Sjogren's as secondary.

  • @LCC1972
    @LCC1972 Рік тому +23

    My son has diffuse systemic sclerosis.
    He's 23. We believe he became sick at 19.
    We're praying he qualifies for a stem cell transplant

    • @Angelaangelinoo_
      @Angelaangelinoo_ 8 місяців тому

      But I was told that steam cell transplant is done only if the patient is in a very progressive stage and meds they don’t help or am I wrong ?

    • @LCC1972
      @LCC1972 8 місяців тому

      @@Angelaangelinoo_ No you are not wrong. My son is very very sick. Right now the IVIG is helping him to have a little more range of motion and not be so fatigued, among other things, but he can only have it for another few months and then we'll see if he starts worsening again.

  • @judycochran4473
    @judycochran4473 11 місяців тому +2

    My mom sister and 2 brothers passed away from this ,my grandson is in the beginning stages of it and also it looks like I may have it also,it runs in our family and I've never heard anyone say that it is genetic but in our family it is.God bless all and we need more studies on this .

  • @lilliamcantillogroundmaint6833

    I'm only 42 years old just got my diagnosis I'm so scared 😢 not have developed symptoms yet.

    • @hoosierbaddy3052
      @hoosierbaddy3052 Рік тому +2

      How do you get a diagnosis without being symptomatic?

  • @richardtarter5184
    @richardtarter5184 Рік тому +2

    Hi Lynn,I hope all is well. I like that quote " I am the storm". I was exposed to Camp Lejeune Water in 1986 to 1988, I have Symptoms. I have been in denial for years but after seeing your video I am going to move forward and get help from Veteran Affairs. I am the storm and I'm not going down without turning into a roaring tornado against these symptoms. Thank you Lynn. God bless you.

  • @brianhall1129
    @brianhall1129 2 роки тому +6

    I truly wish I could help in bigger ways for people with life changing issues I so wish you the best you and ur daughter are beautiful people ..

  • @faithf5846
    @faithf5846 Рік тому +6

    Thankful to hear they are making a drug to help you. I understand living with autoimmune disease. Praying you continue to grow stronger and heal. 🙏

  • @tracymcgrath1192
    @tracymcgrath1192 2 роки тому +13

    Just lost a friend from this. Horrible disease. 🙏♥️♥️♥️♥️

  • @kristinel6352
    @kristinel6352 Рік тому +10

    My mother was given 2 to 5 years but she made it 25 years to age 69

  • @lillyrocks2011
    @lillyrocks2011 Рік тому +8

    I hope pharmaceuticals can invest more to give us patients with Scleroderma medication/s to stop the over collagen production, fibrosis. Something directly to stop 🫷🏽 the skin tightening!! something directly for the mouth 👄 lips. Please , 🙏🏽 couldn't be something injected? Directly?
    This disease should be taken extremely more seriously as cancer, lupus,MS. This is a terrible disease! 😢 (Also, we can have more autoinmune conditions at the same time 😢)
    We're not so few ppl with this terrible, very cruel disease, we're more and more. What's causing it?
    Took me years and lots of humiliations, I was misdiagnosed with fibromyalgia, Lyme, depression by ignorant Doctors. 😢
    Please gives us treatments that help to don't change us physically.🙏🏽 And esthetic treatments please 🥺 🙏🏽

  • @bettina1223
    @bettina1223 3 роки тому +10

    Very good story. Most people know very little about this disease .I have a family member with this. Also not mentioned is that some patients also have Raynaud's syndrome.

    • @theresamurphy6554
      @theresamurphy6554 2 роки тому +4

      The raynauds annoying but along that are the blisters very very painful! Takes me all day to get heated back up not only the heart jumping can't can't breathe cant sallow good chest pains joint pains feet swallowing hands as well it's very very painful stressful I'm 43 & feel 73 everyday is a struggle

    • @barryknight
      @barryknight Рік тому

      @@theresamurphy6554 omg i have the same as you the heart chills

  • @jebbiekanfer8843
    @jebbiekanfer8843 10 місяців тому +1

    They have used methotrexate as a first line therapy along with methyl prednisone for faster results on rapidly developing lesions. Some of the new immunosuppressants are probably candidates for treatment too. Since I’m retired I spend a lot of time on CMEs. I’m doing a deep dive into diseases I really knew very little about. All of you have my prayers that something comes along with a uniform cure for all levels of scleroderma.

    • @nopressurenodiamonds5566
      @nopressurenodiamonds5566 4 місяці тому

      I am on methotrexate for Lupus and its been almost 3 months and I feel zero improvement other than my hip pain is gone. All of my other 101 symptoms are still there and I am losing hope. I know its early on for my treatment but I am scared. I am here bc I feel like some of my symptoms are in line with Scleroderma also.

  • @darlenekelley6023
    @darlenekelley6023 2 роки тому +18

    Our diagnosis is very similar. Scleroderma,pulmonary fibrosis,and pulmonary hypertension,and raynuads. I hope the best for you. Keep fighting and never give up.

  • @mjblue84
    @mjblue84 Рік тому +7

    Excellent video. Thank you! So many women suffering from autoimmune diseases. What is causing this??? Lupus, Crohn's, Scleroderma, RH, Hashimoto's, Celiac (that's what I have), and the autoimmune list goes on and on. They must research for the CAUSE or they won't find the CURE.

    • @lillyrocks2011
      @lillyrocks2011 8 місяців тому

      You're right!! 😢😢 They don't take it very seriously? I don't know. but maybe they think that are so uncommon so not enough money is being invested.
      Scleroderma us absolutely terrible. It's really scary. 😢

    • @nopressurenodiamonds5566
      @nopressurenodiamonds5566 4 місяці тому

      Yup! 42 yrs old and was an energetic, healthy mom of 5. Then one day BOOM my body started falling apart (Covid timeframe 2022) and 2 months ago after searching for answers for almost 3 yrs I have a Lupus diagnosis.

  • @Jane5720
    @Jane5720 Рік тому +2

    I wish you well. You have a beautiful daughter.

  • @gracemares381
    @gracemares381 2 роки тому +14

    I'm son has diffuse sclaroderma lupus ild heart diease ra still he 39 yrs old it's a terrible disease hes lost his teeth he has alot of raynards dosen't help during winter I'm sorry you are going through this my prayers to you 🙏🏼

    • @daysgoneby3527
      @daysgoneby3527 2 роки тому

      Try looking into plasma exchange therapy there's a video on UA-cam about it. It might be a potential help

    • @theresamurphy6554
      @theresamurphy6554 2 роки тому

      Yes the winter but not just the winter air conditioning certain temperatures even when it's summer a certain breeze come by is a wrap

  • @matios6013
    @matios6013 2 роки тому +6

    hope you are fine🙏🌺🌻

  • @theresamurphy6554
    @theresamurphy6554 2 роки тому +7

    I LIKE THAT IAM THE STORM THANK U ❤️

  • @elizabethconroy7665
    @elizabethconroy7665 Рік тому +3

    Hi,Lynn
    Nice to meet you
    You’ve been through a lot and yet still pushing through
    Had never heard of this condition before
    Hugs 🤗

  • @theresarasche3173
    @theresarasche3173 Рік тому +3

    My cousin had scleroderma that affected her heart and lungs! She died of a very aggressive cervical cancer 😢

    • @MoisesTorres-u2u
      @MoisesTorres-u2u 8 місяців тому

      Was she on medication for scleroderma before the cancer?

  • @amandareynolds2670
    @amandareynolds2670 7 днів тому

    I’m Amanda and got diagnosed with diffused scleroderma in 2005 when I was 26 I am 45. I also have crest syndrome. I have good days and bad. I rust ride the coaster for now but they symptoms are definitely getting more matured as the yrs go on. I’m just looking for someone ( a friend) who understands. I find most ppl don’t cuz they don’t see most of what makes me hurt and suffer. Xo

  • @ajh3301
    @ajh3301 Рік тому +3

    I was diagnosed with diffuse systemic scleroderma at 21 years old. I am now 56. This disease is debilitating. I have internal involvement in my lungs, GI tract, heart, and severe Raynauds. I have lost the front of both feet as well as a finger. Both my hands are contracted and my shoulders/wrists are frozen. The fatigue and pain are overwhelming at times. Hoping for treatment in the future.

  • @daysgoneby3527
    @daysgoneby3527 2 роки тому +11

    Have you heard of the plasma exchange therapy? I'm looking into it as a treatment to stop this getting worse

  • @poornimareddy2920
    @poornimareddy2920 Рік тому +6

    I'm 39 yrs old recently been diagnosed with scleroderma and my lungs are affected. I have 2 small kids of 3yrs old. I don't know how would I survive with this disease.

    • @bellgomez5634
      @bellgomez5634 Рік тому +1

      I just got diagnosed with crest yesterday. I have all name symptoms, I have 3 kids one is an adult and the other two are still young.
      I am scared not knowing how long I’ll last ..
      This is extremely depressing

    • @cassandracummings115
      @cassandracummings115 Рік тому +2

      Trust God. Read his word and trust him. Stay positive. Eat healthy and speak life.

  • @theresamurphy6554
    @theresamurphy6554 2 роки тому +6

    I'm one who has it had it now for 6 years for the dry nails fingers I use Vicks vapor rub so I can be able to move fingers make a fist & helps wit pain from the blisters I wouldn't wish this on my worst enemy it's annoying painful can't swallow solid food feet I can't feel if I hit my hands fingers accidentally the pain & heating back up is an all day thing the heart jumping is more but my fingers hurt typing this but it really does knock u down

    • @lisahutchins8186
      @lisahutchins8186 2 роки тому +2

      Sorry to hear this. All the best to you x

    • @chhive
      @chhive Рік тому +1

      I hope the best for you, you’re a strong person.

    • @SassyO100
      @SassyO100 Рік тому

      Sorry to hear of your suffering. I’m early in diagnosis so hands have RA like symptoms, painful and get stuck. I really recommend you try getting an Earthing Mattress Cover to allow your body to ground while you sleep. It will help with reducing inflammation in your body. Try it you have nothing to loose. Just plug it in to a socket that is earthed and (no need to switch it on) I’ve managed to get my hands back after a month now of working with this simple earthing equipment. Google earthing or grounding equipment. I recommend this fir everyone now as I’ve had such positive results. 🙏🏽

  • @jenniferbowen7353
    @jenniferbowen7353 Рік тому +2

    I'm 43, undiagnosed, and have so many questions. I haven't felt well for the last 4 years. Swelling and pain is life now. I drop things often. Keys, pens and eating utensils are not my friend. What I originally thought was calluses across my knuckles typically flares up into rashes and cracks and bleeds. I don't even know where to start to find help/treatment/ diagnosis. Please reach out to me.

    • @laurent2523
      @laurent2523 Рік тому +4

      Hi Jennifer, have you been able to see a Rheumatologist? They are the ones to assess your symptoms, listen to your health history and detail and very importantly run the blood work and other tests you may need that might give you some clarity. On a personal note, Dr Brooke Goldners protocol (you can find her on UA-cam) has been an absolute life changer for me and my yet diagnosed condition, which has been a ‘watch and wait’ from my doctors as I have a few blood markers for both Scleroderma and Lupus. Sending healing thoughts your way x

    • @missj6564
      @missj6564 9 місяців тому +1

      Get a dermatologist to do a skin biopsy of a lesion.

    • @ketiponglalongchar6051
      @ketiponglalongchar6051 День тому

      Do an ena test and if you have -70 antibodies it’s a clear indicator of sclerosis

  • @kevinberry-z1p
    @kevinberry-z1p 9 місяців тому +1

    I have been diagnosed with scared don't for a year now I haven't done anything about it because I don't have anyone to help me I have symptoms but I'm doing okay still drinking and smoking

  • @raghuveernalla2800
    @raghuveernalla2800 2 роки тому +6

    You're the storm

  • @natulcien809
    @natulcien809 Рік тому +2

    How's Lynn today?

  • @nopressurenodiamonds5566
    @nopressurenodiamonds5566 Рік тому +1

    I am very late commenting to this video, but I am hoping someone can answer this question. First of all, I pray that Lynn is doing well, from the bottom of my heart. I noticed her cheekbones protruding especially on one side. SS is a possibility in my pending diagnosis and my cheekbones have developed very high and protruding like Lynns. I wonder if those are her natural cheekbones, or the disease caused this?

  • @sonjauks
    @sonjauks 5 місяців тому

    what is the trial treatment, what medicament?

  • @margipagels9116
    @margipagels9116 Рік тому

    which meds are u taking now? pls Imhave the same and Lupus Ild, Heart cond. gerd raynauds

  • @nopressurenodiamonds5566
    @nopressurenodiamonds5566 4 місяці тому

    Does this affect the palms of your hands? I was just diagnosed with Lupus, but my hands are changing and although Lupus is a tricky, no size fits all disease I feel like the clubbing of my thumb nails, the changing of my cheekbones, and my hand changes point to Scleroderma. The palms of my hands hurt alot as if I was using a tool all day and putting friction on them but done nothing but normal day to day things. It feels like callouses on the palm side below my fingers and they are sore every day. Also, my skin around my fingernails is getting hard and feels like it growing over the nail. I already know I have Raynaud's from Lupus which effects my hands feet and even my nose. Does any of this sound like Scleroderma?

    • @ketiponglalongchar6051
      @ketiponglalongchar6051 День тому

      Yes the palm aches , actually my whole hand aches. I have systemic sclerosis with ild. Just got diagnosed a month ago n tryna accept it. Do an ENA test and if you have -70 antibodies it’s a clear indicator of sclerosis

  • @Murat-eq3cr
    @Murat-eq3cr 19 днів тому

    how can you change whole blood and stemm cells in human body maybe this can be cure another nope because our lymhocytes are self reactive and they thinks our cells are pathogens

  • @jenniferrobertson6754
    @jenniferrobertson6754 10 місяців тому +1

    I just found out that I have sceledrem.

  • @biancab2450
    @biancab2450 9 місяців тому +1

    What can someone with this disease eat, and how can I help them with circulation to legs and hands. My mom is diagnosed with this disease and I dont know how to handle it or help her.

  • @sameerchaudhary6112
    @sameerchaudhary6112 Рік тому +3

    My aunt is suffering from systemic scloderma. She got acid reflux as her first symptom.