Behind the Mystery, featuring the Scleroderma Research Foundation
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- čas přidán 10. 09. 2024
- Everyone should know what scleroderma is and does.
Scleroderma is a rare autoimmune disorder involving many systems in the body. It causes inflammation that leads to hardening and tightening of the skin and connective tissues. In the most serious cases, there can be damage to the heart, lungs, and digestive system-sometimes with lethal consequences.
In 1987, scleroderma patient Sharon Monsky founded the Scleroderma Research Foundation (SRF) with the purpose of finding a cure. Although she passed away from disease complications in 2002, her mission lives on today. Behind the Mystery spoke with founding SRF Board Member Susan Feniger about her friendship with Sharon and how the SRF continues to drive research forward.
They also sat down with scleroderma patient, Melissa, who shared how her diagnosis has impacted her life, and spoke to Dr. Lorinda Chung, of the Stanford University School of Medicine, to understand the many forms of the disease.
Thanks in large part to our community of researchers, patients, advocates, and donors, research is progressing faster than ever before, bringing us closer to a cure.
This piece premiered February 20, 2023 on Behind the Mystery, a recurring series devoted to rare and genetic diseases, airing on The Balancing Act on the Lifetime network.
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Praying for a cure
Dear Lord, please help doctors find a cure for this. Prayers for all that have been affected by this 🙏
Has anyone looked at mesenchymal stem cell IV infusion outside the USA as a treatment? It’s being given for ms, fibrosis disorders, cardiovascular disorders, etc…it’s just not fda approved in high doses in the USA yet. Look at RMI in Dallas and stem cell institute in Panama.
I’ve just been diagnosed and almost immediately went to have msc IV infusion of 300m cells. Not controversial stem cells. Hoping it helps me and others.
Do the research…it’s real. God be with us all🙏
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 cruel and weird of the autoimmune diseases. A disease that turns into mummies. Please, scientists, give us hope. Help us!! 🙏🏼🙏🏼
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A family member of mine has this, it's terrifying. Its been hard to find a specialist for them in FL. If anyone else has been thru this, any advice/referrals would be appreciated.
Hi! What happened? Did you find a specialist? Warm regards!
@@lillyrocks2011 unfortunately no, only out of state but they can't travel freely.
@@RoyaleJellyBean That's terrible 😔 I'm not from the USA. But I've heard in the American universities have Scleroderma clinics. Please investigate if there's a university close that has a Scleroderma center/clinic.
That's the only thing i know or in big hospitals. As Hopkins etc.
My friend (male 29) is going through a severe case of systemic sclerosis, it’s very scary, he was a young fit healthy male this time last year , now his skin is so tight can cannot walk properly, there isn’t much out there / specialist in Australia, can anyone help / recommend anything , this is a very serious case , his family have been taking to too whatever specialist they can but aren’t been given much information, please help