Patient Forum: What You Need to Know About Systemic Sclerosis & Research (2022)

[@Strong_selflove]

Great information thank you

[@islandgal1187]

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.

[@dorothycroston2083]

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.

[@undrhisgrc]

Some things don’t make sense in life…praying for you and him and family…it’s just so hard on everyone😢❤

[@rositamorales3567]

Sorry to hear that ,is very difficult to live longer and have this pain immunity

[@WuFaceProductions]

I’m working on becoming a new patient at Stanford scleroderma foundation. I am a newly diagnosed diffuse ssc patient and have noticed rapid progression in so many new and old symptoms. Especially noticeable in my skin tightening, episodes of Raynauds with digital ulcers, severe nerve pain throughout, severe foot pain that feels like I’m walking on broken glass, fatigue, and sob at rest.

[@Paarthurnaxdova]

I’m so sorry! Tell me, what blood test did you have that was positive and what was your very first symptoms?

[@neethibabu5635]

@MattyTwoHooks This new year I got diagnosed with scleroderma and Raynaud syndrome also mild scarring in lungs. I had thickened skin for few months I took my medication along with Whole plant based diet it is helping me to reduce my medication. Please try taking a good diet with medication.

[@SRFCURE]

Hi @MattyTwoHooks--if you're still trying to connect with Stanford, and would like help doing so, please reach out to [e-mail] and we'd be happy to help. Sending best wishes for you and your health!

[@lillyrocks2011]

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 🙏🏼 😢 👩🏽‍⚕️👨🏼‍⚕️🏥🙏🏼⚕️🕯️☀️ 💊💉 🙏🏽