The SRF is on a mission to cure scleroderma. And we're doing it by finding, funding and facilitating the most promising research available. We recruit the best scientific and clinical minds to investigate the causes, discover new treatments, and ultimately eradicate this disease. In short, curing scleroderma is our mission, and research is at the center of all we do.
The SRF is a 501(c)(3) nonprofit organization and is solely funded through private donations.
www.srfcure.org
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Thankou... I have Scleroderma😢
how to secure life any medican or any other thing
Recently, I visited Your KZread channel and I found some problems. I think and believe that if you can fix that problem, your channel will grow very gradually. Then your channel possible to grow. So are you interested
Your KZread video content is so good. However the video does not get many views. Because your KZread channel has some problems. Do you want to know about the problems?
It's very interesting. I'd like to know if a patient has Scleroderma but also (very) different medical conditions that creates sometimes confussion. It's difficult because we have to be fight more to be believed by doctors because they think we can't have more autoimmune, hormonal conditions at the same time. About Scleroderma it's really shocking the skin involvement, it's scary. I hope we can have a medication that can control and stop the skin tightening please. I'd like to participate in a clinical trial. Hopefully someday , to help me and more people dealing with this disease, and hopefully someday a cure can be found. Congratulations for doing this information conferences. ❤
Scleroderma is a terrible disease. 😢 Hope we can get better treatments, 💊💉 medications and hopefully a cure! 🙏🏻
What causes systemic sclerosis? I have been going crazy researching and trying to find answers. It’s so unfair after all this time and still no cause and cure!
Can the nails capillaries recover if you start early medication or they will stay forever ?
I’m so glad that I went as soon as I got some symptoms I was very president and I got diagnosed just few months after my symptoms and started treatment 🙏🏻 I pray to God that helped me to find this early and hoping for a better outcome. Thank you for this information.
You see, I find a whole bunch of information of systematic Scleroderma. And just in general. There is 0 information on a person who's been abused for the first 14 years of their life. There is no information I can find for people like me. Who got it through being abused through belts and other forms. Where can I find that information
or could it be a false positive for the the anti-SCL-70 in the case of someone showing limited signs
What a wonderful man, may he rest in peace ❤🕊️🙏🏻
What other enviromental factors? Vaccines of any kind?
Thank you Sharon and may you rest in peace ! You made a difference indeed! ♥️🙏
20 years and still nothing that has helped me. It breaks my heart that today 23 years later I suffer with an illness and there has been nothing to help. My body is no longer my body and I am unrecognizable. My doctors really no nothing about Scleroderma and sadly dedication on their part is just not there.
Hi @athenamarieroberts, thank you for sharing your perspective. So sorry to hear how difficult this has been for you. We remain committed to advancing research so that we can find better treatments and ultimately a cure for scleroderma.
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 , pharmaceuticals, give us hope. Help us!! 🙏🏼🙏🏼
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!! 🙏🏼🙏🏼
Excellent disclosure of information for me as I am experiencing sever gastro problems as the result of Scleroderma. Thank you for this.
I'm so tired of living with Raynaud's it's miserable... I have primary Raynaud's, I don't have any autoimmune issues just the Raynaud's which sucks !! I pray they find a cure for this and better treatments, it's debilitating
I get this for DAYS TOO
Thank you for sharing ❤
Thank you for spreading awareness Dee❤
Beautiful video ❤
Praying for a cure sharing for awareness 🙏🙏
Great information thank you
I have ssc.plz advise
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What are your thoughts about trauma aggravating limited systemic sclerosis? Your video discussed the duration of onset of Raynauds/ limited SSc being years. In this case, the patient fell backward onto their hands, causing a fracture in the left pinky (55yr fe). The patient developed Raynauds, finger swelling, and ulcers in 3 months (extreme swelling/ulcers in the right index finger to the point there was concern of losing the finger to gangrene). The first signs of skin tightening and hardening were on the tip of the fractured left pinky finger.
Scientists, pharmaceuticals please could you create a medication for our skin? To stop the collagen over production that causes hardening of the skin, and the fibrosis to our body. Please 🙏🏼 😢 👩🏽⚕️👨🏼⚕️🏥🙏🏼⚕️🕯️☀️ 💊💉 🙏🏽
Scientists, pharmaceutical please could you create a medication for our skin? To stop the collagen over production that causes hardening of the skin. Please !!! 😢 👩🏽⚕️👨🏼⚕️🏥🙏🏼⚕️🕯️☀️ 💊💉
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I hope we can get medication for the skin, collagen over production. 😢 there's nothing yet for this.
Hey lilly i just read some of the comments of yours in diff videos. I just wanted to know how are you doing.
@@ValKyrie-hc Hi,do you scleroderma ?
@@lillyrocks2011 ya i was diagnosed 4 minth ago with scl 70 strongly positive
@@ValKyrie-hc I'm sorry that you have scleroderma. I have limited scleroderma. I was without diagnosis years,Drs telling me that's nothing and silly things. My skin feels tight sometimes, and it's shiny in some areas, very dry, etc. medication help somewhat. That's not my only symptom... It's very sad there's no medication for this. I hope more research can be done.
@@lillyrocks2011 be strong and have faith .I know this isn’t curable but i have seen miracles where incurable diseases had been cured. I will start improving my lifestyle eating healthy,drinking lots of water and exercising i will try every possible things i can do for my self and you should too. Take care of yourself
It's an awful disease! 😢I hope a medication to stop the collagen can be found. 🙏🏽🕯️
I presume that due to being the main organisation that conducts research and is the central hub for collective networking and information that it is already aware of this research and has likely decided against it, but on the off chance it hasn’t, and that someone here is linked to the scleroderma foundation, or is a specialist in this video I ask this.. Has the organisation or anyone in it done any research or treatment on human subjects (in vivo) on a protein called caveolin-1? From what I can tell caveolin-1 is a protein produced by the cav1 gene and is responsible for a lot of functions and regulations but abnormalities can cause inflammation and a lack of adipose fat. A deficiency or mutation can cause a lack of this protein and restoring caveolin-1 by use of a peptide or replacing the CAV1 gene if possible might be the key to treating or preventing pulmonary fibrosis or ILD. I’m looking into this and need to get a test done but does anyone here know if this organisation or any of the specialists have looked into this?
Remembering Bob Saget with gratitude and love, always. 😇❤
Thanks for sharing! This helps me understand what is going on in my body, with my complex diseases!
Good movie. I'm sure it was a mixture of hard & encouraging to do but peaceful in the end. Thank you.
I’ve just been diagnosed and found msc’s. Diseases like ms, cardiovascular diseases, pulmonary fibrosis, kidney disease, gut micro biome, etc are all being successfully treated with this in Panama & Mexico by US phd’s (see Dr. Caplan & Dr. Riordan) Are we looking at mesenchymal stem cell treatment (early IV infusion)? Immunomodulatory effects and anti inflammatory. Must currently go outside the USA God bless us all🙏
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🙏
My father had systemic scleroderma for 20yrs...diagnosed. it probably started a few years before that but nobody knew what was wrong. He eventually had a double lung transplant (1st at Stanford hospital), 2 bouts of cancer and a total laryngectomy. I remember explaining to my own doctors what is was in my family history. Now, most doctors I've talk to know what it is. I wish I could have convinced my father to go to one of these events. He passed 6yrs ago now. I was his caregiver also.
Promo'SM 👌
Can diagnosis of Jackhammer Esophagus as Dx by Manometry as well as experiencing dysphagia be swallowing difficulties symptom catagory?
My dear mother didn’t make it to remission with this ugly disease! Everyday I get lost in the details of why isn’t there a cure and what exactly is this disease! Why did it happen to my mother! Her life was cut too soon! I panic thinking is this heredity… just a world full of limited answers! I’m grateful for this channel and for every researcher who has dedicated their life to finding a cure / new treatments! Thank you!
Very good movie made me laugh and cry😂😢
The best doctor we have met! Dr. T
I watched this movie when i was a teenanger, now i have found it again, it is difficult to see this sad case is not for watch frequently because its quite sad and depressing, i was shocked about that disease i didnt know on the 90s, and this woman fading like a flower, her face her stiff body killing her willpower, but we have to know we all will die and we need to fight the best we can even if we have physical pains, but when we will have to let it go "what you know", remember the good things of our lifes, that we enjoyed.
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
❤❤❤
Big heart ❤️ I hope he’s and very good place 🙏🏻❤️I have scleroderma I will watch he’s movie 🫶
speaking of big heart ? bob's movie is callesd for hope i watch it on youtube
I have lost all hope of my husband gaining any quality of life before the end of his life. He was diagnosed with diffuse systemic sclerosis in December of 2022. We had searched for answers for 3 years. It wasn't treated because we didn't know. He is currently in the hospital on a vent after several rounds of aspiration pneumonia. He has dysphagia, gerd, intestinal slowness. He has pulmonary hypertension. His body is stiff. He has very little mobility. He also has a recurrence of lung cancer and COPD. Please find a way to make it easier to diagnose. This is a cruel way to die.
Some things don’t make sense in life…praying for you and him and family…it’s just so hard on everyone😢❤
Sorry to hear that ,is very difficult to live longer and have this pain immunity