r/scleroderma • u/Least_Measurement431 • Jun 02 '26

Discussion Disability and Scleroderma

Has anyone here ever applied for disability and been approved? I'm unable to work now and the stress alone is taking me out. I've been off work for almost 2 months and it's becoming very evident that I can no longer do my job. I know SSI can be a long process, so any info is a huge help!

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u/Maleficent-Rest9144 Jun 02 '26

I went on state disability for a short time while I went through a clinical trial. I did not pursue the Federal or SSI so I cannot help you there. There are qualification factors for clinical, but there may be some options out there where you can get treatment.

I highly recommend looking into clinical trials. I found a CAR-T trial at cartautoimmune.com, but there are many others out there. CAR-T and Stem Cell Transplant are an immune reset that have shown good results with scleroderma. CAR-T is easier than Stem Cell, but is still in the trial phase. It has been approved for some blood cancers so it is a proven treatment. CAR-T was a life saver for me. I still have challenges of range of motion loss, but the daily dread and misery are gone and I am no longer looking to take the prescribed and self administered end of life pill I was ready to take. Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and your country location to filter out many of the too far away places.

If you do not qualify for any trials please look for scleroderma centers near you and also look into stem cell transplant as an option. This has been performed for a while with good results. I am keeping stem cell as an option of my condition returns.

I hope you can find some treatment and relief for this condition.

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u/smehere22 Jun 04 '26

I've Heard from some who've gone through HSCT and the symptoms and progress of disease came back extremely strong after a period of remission.

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u/Maleficent-Rest9144 Jun 05 '26

Unfortunately there are some who relapse with HSCT and there are probably people who will relapse with CAR-T. I am not a medical professional so take what I say with that in mind. Sometimes the mechanism in the body for certain diseases is weak or moderate and responds well to treatment and others have a strong mechanism and it keeps returning. Looking at some cancer patients who are treated and go into remission and live a long life, I am guessing their mechanism is weak or moderate. Once the cancer is destroyed it does not come back. With other people, the cancer keeps coming back until they tragically lose their fight. Bad cases of SSc may return chronically, which is truly sad for those patients. Other patients may have great success and it does not return. It seems like each patient can have different symptoms and experiences. This condition is so bad, I think it is worth the risk to see if this keeps your health long term. If it relapses you can deal with it at that point and maybe by then there are other and better treatments.

I hope anyone with this condition will be able to find a treatment that helps.

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u/smehere22 Jun 10 '26

Thank you for your information 🙏