My Life with Systemic Scleroderma
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- Опубліковано 23 вер 2024
- Hi, Open me, please!
This video is about my fight with Scleroderma. It's the first time I am openly sharing, and the first time I have ever felt so free with sharing it. This is obviously my first video, I apologize for some of the shaky quality.
This doesn't even compute my full story or just how far I have come with my life, I appreciate everyone taking the time to watch and listen.
Shout to my mom as well for getting up super early and going out in her PJs to film this!
You can find me on Instagram if you'd like to keep up with me!
baileyy_elizabeth18
I feel your pain. My mother was diagnosed with progressive scleroderma in 1991 and she was told that she would live a year. She fought it and lived for another two years. She was one month shy of turning 45 years of age. I miss her so much. It's been hard to live without her all these years. Keep fighting Bailey!
I'm a Thai. I 've been living with Scleroderma
for almost 10 years.
I have a good health at present. Bless you all.
Thank you for sharing your story ❤
Beauty Beyond 50 you are welcome!
God Bless you 🙏you are a fighter and I admire you for that , thanks for sharing your story I’m also dealing with that and you are giving me hope to go on, God Bless You🙏
Thank you for sharing your story, I am a survivor too
As a mother myself, I cant imagine how hard this was for your parents, you are truly inspiring. God bless you and your family. Thanks you for sharing
I have a brother with systemic schleroderma for the past 28 yrs. He is in wheelchair and gets around on his own and pretty much fends for himself. It is a very painful disease and it has taken over his life. Before he was diagnosed, Drs. had no clue what he had. They told him the prognosis was 10 to 13 yrs. and they were wrong. So I dont think theres not been alot of research on this disease. The skin hardening is due to too much collagen produced in the body. There must be a way to get rid of so much collagen, technology is so advanced these days, theres gotta be a way. I am sure its got to do with diet. My brother hasnt been able to walk for the last 25 yrs. I feel for him. I was diagnosed with Raynauds in 1985 and I am 63 yrs old. My brother started with Raynauds and later witj Schleroderma. I have RA. Its still painful. But at least I am walking. 😩😩😩😩😩😩😖😖😖
Bailey, I was diagnosed with Scleroderma at the age of 14 with the onset of the characteristic Scleroderma precursors: Raynaud's & ulcers, acid reflux, swallowing/motility issues, and Interstitial lung disease. I went rapidly from a kid wanting to do normal kid stuff into a kid with an uncertain future. I know exactly what you are going through when you talk about what it's like to be a kid and live with the disease. I've now entered into my 31st year with this disease. What you said in your video pretty much sums it up. When I was a kid, computers and social media weren't really out there yet so there was not a lot of information about the disease. The common 10-year life expectancy statistic thrown out there in the mid 80’s by doctors felt like a death sentence to families. It was due to the lack of research, treatments, and understanding in the medical field at that time. Rare disease really didn’t get the same attention as juvenile cancer or diabetes. It still doesn’t, but things are getting better thanks to social media . Thanks to better awareness from people like you, research, and better treatment options, people living with this disease can live full and rewarding lives in the midst of suffering. Thank you for making this video. You're a beautiful girl with an amazing spirit who will give hope to other kids going through this. I hope you continue to be an advocate. I've found that despite all suffering this disease causes, life is beautiful and precious. God and the people he places in along the path are what keeps me going for sure. Keep spreading awareness :O) Peace ~Kristine
Kristine Washburn you are just as amazing!! Here's to you for beating that ten year life expectancy! Keep fighting girl!!
Your story is just like mine I m also diagnosed at the age of 15 and now I'm 31 now I'm taking ayurvedic medicines yog meditation it helps me so I want to share I m from India
tulsi tulsi
What medicine and from where in India what yoga asans you do
I am so glad I came across your video! Doctors believe I have scleroderma but are reluctant to diagnose me due to negative blood work. Just had a biopsy done and hoping it will confirm it so I can start some kind of treatment soon. If you don't mind me asking, what treatment has helped you the most? I am so scared as my skin keeps tightening and I just pray there's something to slow the progression. I have been so sick for months and I know this is what I have with everything inside of me...most things I've read have not been too positive so coming across this just made me cry happy tears for you! It's so awesome that you haven't let a disease stop you from living your life. You are beautiful inside and out and I can't thank you enough for sharing your story! May God continue to bless you!
lchristine2 thank you! That means the world to me! I e been on every medication in the books. A year of chemo, cellcept, methotrexate, but oddly enough what helped me was taking a med called prograf it's a anti organ rejection med. that is what slowed it down and caused the disease to chilll. I'll be praying for you, I hope you get the results you want, I'm here if you ever want support! Keep your head up girl!
lchristine2 I
Ok hope you do not have it! Don't rely on others for your treatment options. It a problem unique to every individual. I am getting a stem cell transplant, others go on immune suppresants. Take it one day at a time. All the best.
Great video!! Thank you for sharing your story...
you are so kind to share this
So inspiring. Thanks for sharing this.
woodswal thank you!
Bailey Schwartz You are welcome. I too have Reynard's Phem along with scleroderma and my digestion troubles are the same as yours. In the mourning I put hot water, matcha latte powder 1 to 2 heeping spoons , tumeric 1 spoon, a little ginger paste, honey 1 to 2 spoons, coconut sugar 1 to 2 spoons and a little milk and I blend it all together. Sometimes I add a spoon of coconut tea. I drink it to replace coffee and because I still have food in my stomach in the mournings from slow digestion this helps and warms me up. I perfer plain matcha from teavana but it is so expensive.
Bailey Schwartz You can find Traus matcha latte at TJ Maxx and CafeCA Coconut tea at wal-mart or amazon.com
woodswal oh wow, never done that or thought of doing that! I'll have to give it a try! does it help make you feel less nauseous in the morning?
I feel for you .. i was diagnosed at 23 yrs old now i am now 37 yrs old .. everyday was a living hell ..
I hope you are well 🙏
Do yogic pranayam
Breathing techniques
Kapalbhati 15 minutes and anulom vilom 30 minutes
It will ease lot of things
bailey, i came across your post when i was researching scleroderma. what a beautiful video you have made both visually and in content. it looks like you are stepping into your future with great promise. i wish you all the best.
onedumbbaby thank you! I appreciate that more than you know!