Act of Love

Hi I am new to this site and looking for people based in the Uk who have scleroderma. My sister who is also my best friend was diagnosed a year to date with diffuse systematic scleroderma. She is listed as Cole57 and we are both here to read about people's experiences, share what knowledge she has from her own and learn more about something that is very rare.

My sister has been offered a stem cell transplant and I want to best support her through whatever choices she makes going forward. If you know of anything, have been diagnosed with something similar, we both look forward to hearing from you and hope through the ups and downs, we can support you.

10 Replies

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  • Hi

    Im new to all of this so can't offer any advice on treatment but wishing your sister all the best with whatever choice she makes.

    Glad you are there to support her - having someone holding your hand makes such a difference

  • Hi Winfield1

    Thank you for your words. It does help having someone and I hope you have someone too. If you never need anyone to talk to I am here and my sister is Cole57 x

  • My cousin in America had a stem cell transplant that worked very well. She is fine.

  • Thank you for this. Is your cousin on this platform?

  • Yes. She was done 10 years ago when she was in a terrible state. She is fine now and has been for years. Cured.

  • Awwww thank you. Hearing that helps a lot and I am happy to hear your cousin was cured x

  • I've not been offered stem cell treatment, but I've heard if you're a candidate for it, it can all but cure SSc. I wish your sister all the luck in the world, she's very lucky to have such a supportive sibling.

    As I'm not religious at all, I'll just send you healing vibes 😉👍

  • Healing vibes is just as good. I wish our all the luck in this journey and do hope you have people you can talk to x

  • Yes my gf is an amazing woman who takes great care of me. I'm a very lucky woman to have such a great girl by my side.

    It's really important to have emotional support when you're suffering with a little known illness. It's very scary and at times life felt not worth living. At least, it used to before I had a change of attitude towards SSc. These days I'm grateful of the good days, and ecstatic if I grab a pain free day 😁 but when there's bad days, I'm now in acceptance and rather than get upset I embrace it.

    Haha it almost sounds religious 😱

  • Lol it does but it's spiritual and they all blend in some ways.

    You sound just like my sister and probably so many others too. It's to be expected the emotional rollercoaster that you are on. It hurts to see the down days my sister goes through and I try my best to lift her up as much as I can.

    For something which has such a big impact on ones life, it is little known and that's why I'm here just trying to find out as much as I can to help my sister because I can't take it away nor ever really understand what she's going through, but just be here.

    But I'm happy you have your partner and I hope you are receiving good care and advice x

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