"Dear Scleroderma" Bailey's Story
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- Опубліковано 21 лип 2024
- "Dear Scleroderma" is a documentary series that portrays the physical, mental and emotional struggles of Scleroderma patients who are battling this difficult disease.
Scleroderma is a rare, incurable autoimmune disease that causes a hardening of the connective tissue and can cause a wide range of life altering symptoms such as: difficulty swallowing, painful tightening of the skin, painful changes to the muscles and joints, difficulty breathing, painful sores on finger tips, and many more. When internal organs are involved this disease can be life threatening.
Awareness is crucial on the road to finding a cure. Please share this video and help educate others and inspire support of scleroderma research!
For more information about scleroderma and to support Project Scleroderma's ongoing efforts to raise awareness please visit: www.ProjectScleroderma.com
To support scleroderma research please visit: www.srfcure.org
I was diagnosed with Scleroderma in high school at the age of 17. I was also told I had systemic sclerosis. I was told I would not be able to have children, and basically to just accept my fate. Like you I knew God had more in store for me. I have been married for almost 43 years, I have 3 children, and nine grandchildren and I’m still going strong.
That great I was diagnosed last year before Thanksgiving
My Mom was diagnosed with systemic sclerosis back in 1976 at the age of 35. At first they said that it was an acute form and she would die in 2 months. She waited and prepared but did not die. She lived for more than 20 years with the diagnosis. She might have lived even longer, but we lived in the USSR and a lot of medicines and treatments were not available. Fortunately, my father had a friend who lived in Western Germany and at some point he managed to send my Mom certain hormone-based preparations for treatment. These helped a lot.
I have it too. It's systemic. My skin is awful. My hands are bad. But I'm holding on to God!!❤
When are we going to have a medication for our skin? To control or to stop the skin fibrosis, tightening. This is one of the most strangest, and cruel of the autoimmune diseases. A disease that turns into mummies. Please give us hope. Help us!! 🙏🏼
Thank you, Bailey! You are a remarkable person, whose courage and wisdom no doubt helps others with Scleroderma...and anyone facing a rare disease or disease of any kind!
Hi there love I understand i too have this disease thy told me its limited but my hands are really messed up but i feel better after getting my meds but im scared but also grateful it could of bn worse idk thts how I think ....to know my future i just give it to god i havent bn thru all youve bn there but im still here with you with this disease❤❤❤❤we r family
I hope a cure or medications to stop the fibrosis, collagen over production can be found.
🙏🏼☀️
Thank you for sharing your story. You and your family are beatiful people and it's amazing how you use your passions help pull you guys through the rough times. This educated me on a disease I never knew existed. I'll be sure to share this to others.
❤️❤️❤️thank you
I had a girlfriend married with 4 beautiful children. She was diagnosed with Scleroderma. She found and after 7 years slowly she became better. This was in the 1990s.
stop reading google about you live 2-3 years. you can live a normal life but will be on medication. stick and trust the doctors and seek help! dont ignore it.