Facts and Life with APS- World APS Day
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- Опубліковано 7 чер 2016
- APS is antiphospholipid antibody syndrome, a disorder where the immune system mistakenly attacks normal proteins in the blood
For the APS awareness month of June, I made this video to share some facts about APS, as well as some of my personal experiences living with it since my first blood clot and diagnosis.
June 9th is World APS Day, wear burgundy or something with dragonflies if you would like to show support of those with APS
dmgbyrnes.com/
dmgbyrnes.com/2016/05/18/28-t...
www.apsfa.org/
www.nhlbi.nih.gov/health/heal...
Thank you for this post. I'm a rare case as I am a young male finally diagnosed with APS in early 2017 after a stroke in 2015, partial foot amputation, sepsis and flatline twice. This needs to be talked about more so great video and thank you😊
This video is great! I just recently got diagnosed with APS. Thank you for posting I have felt so alone.
3 years ago I ended up in ER with a sore/stiff leg and shortness of breath. I ended up with 20cms of blood clots in my left leg and blood clots in EVERY blood vessel in both lungs. Each doctor that read my notes did a double take as they couldn't believe I was alive. I went into hospital on the Monday, out on the Friday and back to work full time on the Monday albeit shortness of breath and spent each lunch break napping for the first two months. More blood tests were done and they said I have triple positive APS so am on warfarin for life. Am currently 30 weeks pregnant with my first baby and take 2 x 100mg clexane injections a day and aspirin. So far so good but who knows what would have happened had I tried having a baby before being diagnosed. Had never heard of this auto immune disease before. Great informative video
I'm sorry to hear about your difficult journey to getting answers, but so glad you found them, especially before you tried to have a child. I'm also glad to hear things are going well and wish you the very best and hope you have as safe and smooth a delivery as possible, and that you're all as well as can be. Definitely have to be extra careful right now with the pandemic since APS is an autoimmune disorder. I'm so happy you found this video to be helpful, thank you so much for commenting. Please take care of yourself.
Thanks for the video. I'm a 40yr old single father of two who was diagnosed with APS last year. I have several other autoimmune diseases as well. Recently I was diagnosed with Pulmonary Arterial Hypertension which was caused by one of the other autoimmune diseases that I have and APS. I'm currently battling Covid at the moment which complicates things even more. It's been a long hard road just to even get the diagnosis that I have because of the "male vs female" stigma with autoimmune diseases. I spent the first 2 years being yelled at by specialists who claimed that I was just "searching for pain narcotics". During that time, APS completely destroyed my body. Because of lack of blood flow to my lower extremities, I now need bilateral hip replacements and bilateral knee replacements. I also became single because no one, inclining my wife, believed that I was physically going through what I was going through and thought I was faking my illness and pain. Even after the diagnosis, there are still people, including family members who just absolutely refuse to educate themselves about my condition. Just because I look "ok" they assume that I'm faking it. Even getting on disability has been a terrible ordeal because "I look fine". Doctor's always have said, before my diagnosis, that I was just suffering from anxiety and depression and completely ignored my complaints. Even with the diagnosis of Pulmonary Arterial Hypertension, my rheumatologist was upset with me because it was another specialist who diagnosed me with it and not her. I know I need to make a video about my journey but only for APS awareness but awareness for male APS sufferers because it's so incredibly rare.
Thank you for this video, I was diagnosed with aps in March and have seen very little videos of people talking about their experiences with it.
I'm so glad it helped you in some way. It can be very difficult soon after you're diagnosed, but it's good you have been. Now you can learn about it and do what you feel is best for your body. Thank you so much for commenting and for watching. Feel free to send me an email sometime. Wishing you well. ~DMG
Thanks for the video; I often direct friends here when they're curious about why I'm constantly fatigued-- I'm sure u know the "but u don't look sick" frustration. I was diagnosed at 23 after delivering my son prematurely, and developing blood clots in my left leg & lung. I have used warfarin for about 18 years, but threw a clot when I tried to switch to Xarelto for 2 months, but have thrown a clot on warfarin also, so... yeah. But I've made it to 41 yrs old & my premie son, born 2lbs 2oz, is now 18 years old and healthy-- I'll take it! Thanks again! 🍓❤️
Wow, thank you so much! I'm so happy to hear that this video has been helpful in any way. Indeed, I'm well acquainted with "but you don't look sick" BS. I always want to reply "sorry, how am I supposed to look? I'll work on it..." When I had my TIAs I was also on warfarin but had mixed up my dosage and didn't realize that I'd dipped below my sweet spot, so I didn't know I was at risk. It's horrible when the options we have can be unreliable or finicky. I'm so glad to hear that your son is doing well, it's wonderful you were able to have him. Definitely have to take what you can get and make the rest of it work for you where you can. I hope you are also doing well and that you have Happy Holidays. Best wishes and take care!
Thank you for sharing your story and for shedding light on APS. I hope you are well and I’m sending prayers of strength and hugs your way xoxo
I would also like to thank you for this video, i live in Australia and we have maybe three specialist who can help us and not much else, so i have had to do a lot of my own reserch, watching you video made me cry because i was able to see i was not alone in this. From the bottom of my heart thank you.
P.s. totally get it about the migraines by the way!
Melissa, wow, I wish I could I was surprised at the lack of specialists. I mean, I live in Atlanta, Georgia, and when I was first diagnosed there were almost no specialists in APS nearby. Settling for some hematologists and rhuematologists that have actually heard of it is often the best many with APS can get. I'm so happy you found this video helpful. I'm always champion of doing research yourself, regardless of how good your doctor(s) is/are. I hope you're doing well and have a good plan of action to keep you taken cared of to the best of the ability possible.
P.S. I know right? the migraines can be straight from hell.
thank you, cute and smart talk about APS
It sucks! Lost 4 babies. 1 made it. They can't believe I made it to 55. Lots of strokes. Brain aged to 85- 10 yrs ago. Now have dementia because of brain damage and memory damage and so tired, in pain and fights about getting pain meds and even migraines meds. It is just a waiting game till it attacks my one kidney and I believe it is destroying my breast tissue. I am a positive person but it is hard, home bound and now bedridden. lung and heart problems. Very hard!
you are a warrior
God bless. I’ve got 30 years of it under my belt. Just brutal.
You can eat green leafy vegetables if you are consistent. They will adjust your warfarin if you eat a lot. Also Xarelto is now approved for APS and you don’t have to worry about your greens.
Indeed, I'm aware that you can eat green leafy vegetables, but you have to be careful about it. If you are inconsistent about what kind of greens and how often, it can be more difficult to adjust medication dose accordingly. Also, when I had my first clot, I was told to stay away from greens until my levels were under control and I wasn't in as much danger. If Xeralto is now approved for APS, that's great and I hope it helps people. I'm still not comfortable taking it at this point.
thank you for this xxxxxx
Thx for your post.
Thank you for watching and for commenting. I hope you are doing okay.
Thanks so much for this video! I believe i will be diagnosed with APS soon, wish there were more videos like yours. You are also so adorable!
Thank you so much!! I hope you get the proper diagnosis and care you need, that your symptoms are mostly manageable for you, and that you have the support you need and deserve. I'm so glad you found this video helpful, it means the world to me. Also, thank you ☺
@@DMGBookDragon thanks so much for your kind words. I wish you the best as well! I am curious, have you ever thought about uploading more videos on UA-cam? You have an awesome personality.
@LegendaryMel thank you so much!!! ☺️🖤 I've actually been working on some for a long time now. I probably have months worth of content lined out, if not more. Between various things (including limited energy and processing power), I've kept second-guessing myself, doubting anyone would care. But hearing/knowing that people are interested makes me feel so much more motivated! Thank you ^-^
@@DMGBookDragon I think it would be really cool to see your videos! You seem like a unique person who has a cool perspective on things. Hope you get to post them soon, I would totally watch ⭐😺
@@LegendaryMel Thank you so much ☺ I really appreciate the encouragement and your interest.
Ty so much i just been diagnosed with Aps
Thank you for watching and commenting. I hope you have a team of doctors that you like and are comfortable with, and that they are helping to take good care of you. Just being diagnosed can be so anxiety provoking, especially when there are so few doctors that specialize in APS. I hope you are doing well and taking care of yourself. Please feel free to email me sometime if you would like to talk. Take care and wishing you all the best!
Thanks so much for posting this. Last year I was diagnosed with APS even though I have been battling the symptoms for years, but it just got worse in the last few. Searching here in UA-cam only a few videos show up about this :/ Just wondering: Does anyone else also experiment trouble taking the sun light? I feel like dying after getting exposed to the sun, so I have to carry an umbrella everywhere I go.
Hello! I'm so glad you found this helpful or that it resonated with you in some way. So sorry to hear about your struggle. I hope you've been able to find a doctor you trust and have a handle on the most dangerous aspects for you.
I'm allergic to the sun, essentially, have been for years (was actually known around my college by a few people as 'parasol girl' because I used one when going between buildings/class). I've put it up to my Lupus, though; but there are many symptoms that are a dice roll of which chronic illness it could be attributed to. I'm not sure I've come across many other people with APS only that deal with sun sensitivity, but that's just my experience. I do know that some medications can make you more sensitive to the sun and feel sick as well. Regardless, I hope you have spoken with your doctor about it and continue doing what you need to protect and take care of yourself.
@@DMGBookDragon Thanks a lot for your reply! I'm still in the process of finding what else I might have (things take time in my country, longs months of tests), but surely hope I don't have other things, with this is more than enough T.T Big virtual hug for you and to everyone battling this!
@@massysmNo problem! I'm glad I saw your comment :) Ah, I understand. Diagnosing chronic illnesses can be a huge, long process in many countries, including mine; especially if you haven't had a huge event that specifically points to the need or in a direction, like my PE (17 year olds don't normally get PEs, and my mother had history with APS, so they had a line something to follow up on more easily). I understand. Any chronic illness of any degree can be a lot to deal with and get a handle on. I hope you get the care and answers you need soon and continue to take care of yourself. A virtual hug to you as well. Best wishes and take care!
I was actually misdiagnosed, begining of this year 2017, because of my young age (not technically young, 27). He literally told me they had idea why i felt shortness of breath or why i passed out and got send home for 2 days for fatique. take into account i had PEs in both lungs. I shocked the doc that i managed to live through 3 days with severe symptoms before they realized exactly what was happening.
Since then I have been on Xarelto (my main point). The first few weeks were hell. the side effects included limb pain, headaches, chest pain, fatigue, and i had them all. i was started on a 15mg dose twice a day for a month (wanted to sleep all the time) then changed to 20mg once a day. I decided taking them before bed helped me stay alert during the day. i got the side effects again when they changed my dose.
Tylenol ended up being my savior! it took all the pain away till i was accustomed to the meds again. i still occasionally get pains but not as severely. it allows me not to have to worry about my diet or INRs. it's a simple pill and I love it, but dont drop them! they are very small and very expensive.(done with Xarelto rant)
Im closing in on my 6 months of treatment and my doctors are telling they will take me off my blood thinner. It freaks me out but not sure what to tell them. I have primary APS. Have you or anyone else been taken off medication or should I be more demanding about staying on?
Oh my! PEs in both lungs, I'm so glad they caught those and were able to treat you! I'm also sorry to hear you experienced such unpleasant symptoms with the Xarelto, I've heard plenty to keep me away from it personally.
As to your question, let me first say that your body is not mine, and it is ultimately up to you how you want to treat it. This includes telling doctors how you wish to treat your illness. I am also not a doctor, nor am I familiar with your medical history.
I would speak with your doctor about your concerns. Perhaps they will have you do something like taking aspirin, or continue to treat you longer, I couldn't say, but speaking to your doctors about your concerns is the best place to start. Or doing your own research, depending on how much you know about your specific case. Go in with questions, write
them down if you need to. But if you aren't comfortable, say something.
That being said, someone who has shown no other symptoms of APS may be treated for whatever the issue was (in this instance a PE, in others it's a DVT or clot in the leg). After that, it's my understanding that people come in for at least yearly tests, and there's a general "be ware" of symptoms that might be blood clots, and knowing when to go to the hospital or doctor. For some (in cases like my mother or sister), it's recommended that they take aspirin daily as their "blood thinner" to essentially ward off the possibility.
For me, I was never taken off of them. With my age, what the blood tests were telling them, and then eventually my subsequent blood clots, it was determined that my case will be lifetime treatment with blood thinners because there's just too high a likelihood I will throw a clot otherwise.
I hope you have a good conversation with your doctor and wish you the very best. Take care of yourself, Edith. Thank you so much for your comment, question, and for stopping by.
APS runs on the female side of my family. My mother, sister, grandmother, and aunts have it. My mom lost her leg and almost an arm to it.
It really likes to target women. My condolences and well wishes to you, your mother, and the other ladies in your family. I cannot image dealing with such a level of damage. It effects individuals and families in so many different ways which further adds to so many doctors' misunderstanding or lacking in information related to APS. I hope they are all getting the treatment and care they need, and that you take care of yourself. Wishing you all the best, Jahn.
I was diagnosed with ap s after having a young stroke (46). I had to have open heart surgery to remove a massive clot from my heart. Fast forward after having a major surgery i had kidney as well as liver failure. My doctors at this point didn't know why this happened. After several doses of lovinox and kidney dialysis we got things going again. This episode of health issues happened in a different part of the country so they couldn't answer why. I had no idea that aps could have been this issue. I was under the impression that aps didn't hang around. Anyway after contacting aps of America i found out that is not the case. Now I am on a low dose of aspirin and regularly see a hematologist for monitoring. I do suffer from depression, anxiety and extreme fatigue.. My doctor told me it's not a matter of if I have another episode it's a matter of when.
Oh my, I'm so sorry you went through all of that. I'm sure it was and still is exhausting in many ways. There are so few doctors that specialize in APS, or even know what it is. Many times I've had to explain to doctors (many in the ER) what APS is and remind them that I'm on blood thinners when they try to prescribe something new. There can be some damaging misinformation around APS, that's for sure. As long as you are on a blood thinning regime that works for you, and are sure to follow up as needed, and make necessary adjustments, it's very possible to not have another blood clot; at the same time, things like missing a dose, not paying enough attention to your diet, etc., can put you in serious danger of a blood clot. Knowing the risks, doing the research, and doing what's best for YOU are all beneficial and help keep you safe. I can't say much about trying to deal with fatigue, other than rest when you need and try not to beat yourself up about needing it, but definitely try to establish a support system to help with the depression and anxiety. I hope you are doing okay now and are taking good care of yourself. Wishing you all the best!
I'm so glad I found another person with APS. I've lived with it for 6 years now and have gone through two rounds of chemo to just manage it because I kept on metabolising the blood thinners. It's a relief to see someone else that can relate to all of the shitty symptoms.
Oh goodness! I've been lucky enough to not have to deal with chemo, but I know handfuls of people that have. I'm so glad you found some comfort in not being alone. When I was first diagnosed, there weren't many avenues available for me to find and talk to anyone else that was dealing with the same or similar things as me, and with the same cause. I hope you are doing well, and please feel free to email me sometime if you ever want to talk. Wishing you all the best!
Hi My name is Lynn, and I was diagnosed with anti-cardio lipin antibody disease. I was diagnosed at age 36. but had previous problems in my past. a had a DVT AT 16 and was put on phenalbutazone. When I was 21 I was married and pregnant and had a still born at
6 mths. along. The following year I had a miscarriage at 3 mth. Was nervous about getting pregnant again. Four mths. later I had multiple blood clots in my left leg and had a vein stripping done, after which I got a vascular ulcer. It was open for 5 years, until it healed. In
the years to come I had multiple venous ulcers. Was finally diagnosed at 36 with anti-cardio lipin disease and was put on warfarin. I am now going on 59 and stil have problems. I think I'm going to ask my doctor if I actually have anti-cardio lipin or antiphospholoid syndrome.
It's the same 😊
Anti-cardiolipin antibodies syndrome
Hughes syndrome
Antiphospholipid-syndrome
Hello Your video was very informative. I’m 55 & recently received APS diagnosis about 5 months after diagnosed cerebellum TIA’s. Within months I also received diagnosis of aorta ascending aneurism which is being monitored & have fallen a few times possibly when TIA’s occurred, causing fracture/compression of lumbar, bulging disks in cervical. I’m grateful I finally received diagnosis & treatment to hopefully prevent more TIA’s but the diagnosis(s) suck because they effect my quality of life. Any suggestions on working with ‘self-stubbornness’ because sometimes I’m my worse enemy & I know it worries my family & I want to live a long healthy life.
Hello, Jacqueline. Thank you for your comment, I’m so glad you found this video helpful and informative. I’m sorry to hear about your recent medical scares and difficulties, and hope you reach a stable enough plateau soon. Diagnosis, while frustrating, can be so validating; we must acknowledge the privilege in being able to get a diagnosis.
Being stubborn is something I’m intimately familiar with, especially when it comes to trying to retain or extend my quality of life. That being said “self-stubbornness” in this context is often also accompanied by internalized ableism.
So, please learn how to be gentle and patient with yourself; give yourself time to adjust; don’t compare yourself now to earlier versions of yourself; remember that resting isn’t a retreat or resignation; it is resting. Your body may need more rest, different attention, or more care; and that’s okay. You are still you and can still be stubborn; you can even be stubborn while you rest and take good care of yourself to be stubborn another day.
I truly wish you the best and hope you take care of yourself. Please feel free to reach out on social media or through email, sometime. ~ DMG
I had to quit college my last semester.
Sorry you have this disease
I appreciate that. However, the most difficult aspect is the lack resources and supports needed to properly manage it.