Відео

I hope you are well 🙏

I'm a Thai. I 've been living with Scleroderma for almost 10 years. I have a good health at present.Bless you all.

I'm a Thai. I 've been living with Scleroderma for almost 10 years. I have a good health at present. Bless you all.

I feel for you .. i was diagnosed at 23 yrs old now i am now 37 yrs old .. everyday was a living hell ..

I had no idea you were going through all of this. The Lord will only give you what you can handle. Bless you all.

Thank you for sharing your story, I am a survivor too

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🙏

Do yogic pranayam Breathing techniques Kapalbhati 15 minutes and anulom vilom 30 minutes It will ease lot of things

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!

Great video!! Thank you for sharing your story...

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. 😩😩😩😩😩😩😖😖😖

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

Thank you for sharing your story ❤

you are so kind to share this

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!

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

So inspiring. Thanks for sharing this.

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.