Systemic scleroderma in children

[Domrolle]

My daughter (6 years old) was diagnosed with Ststemic Scleroderma in August. Is there anybody else experiencing the same thing with their children?

[OldTed60]

I’m very sorry that your young daughter has received this diagnosis - it must be extremely tough for you. I was 60 when I finally received the diagnosis last year but it’s been a very long journey living with several other autoimmune diseases since I was a child as well.

Coincidentally I was reading up the other day checking through the new BSR guidelines published this year and there are several sections about juvenile/ junior systemic sclerosis here in this recently published paper. I think I read that children diagnosed with this condition have a better overall outlook - maybe just because treatments are better now and they are typically more resilient than older people. I attach the paper here for you to scroll though and wish you and your daughter a very happy Christmas and New Year ‘25.

Take care and please keep coming here for support, updates and keep asking questions about you daughter’s treatments and care. Wishing you both the very best 😊🎄

academic.oup.com/rheumatolo...

[Domrolle in reply to OldTed60]

Thank you very much

Hope you have a lovely Christmas as well

[Clangerscat]

Sorry I can’t help you with your question but just wanted to wish you all the best. Treatments are so much better now and improving all the time, I’m sure your little girl will get the best care. I hope someone in a similar situation sees this and answers you but if you don’t get a reply it’s always worth reposting at a later date. Many of us are guilty of only using the forum when we have a question. Take care.

[Tiggywoos]

so sorry to hear this . I would definitely get in touch with SR UK who I’m sure will be able to provide you with accurate information and sign posting if necessary . Do take care

Scleroderma can affect anyone, at any age. When your child is diagnosed with scleroderma it is important to have reliable information and support when you need it. We are here to help, and you can call our free helpline on 0800 311 2756.

[creditcrunchie]

It must be such a worry for you having received this diagnosis for your very young daughter. I have been on this site for 16 years and it’s a first seeing a post related to a 6 year old. As others have replied it’s hard to offer any advice because I would imagine it’s so rare and I wonder now as a percentage of the 190.000 diagnosed with Scleroderma how many are children. I hope you have a good Rheumatologist who has a specialty in Scleroderma and what I notice in so many of the posts is how many subscribers see a Prof Denton who seems an amazing doctor who specialises in Scleroderma. This weekend I read about a medical breakthrough for people with autoimmune disorders “apparently there are over 80 plus such disorders) but there is new research into a treatment called CAR T-Cell therapy ( or chimeric antigen receptor T-cell therapy and was originally developed to fight certain types of cancer) ~ could potentially stop all these incurable disorders in their tracks by resetting’ the immune system so it ceases its attack on healthy tissue”. Quoting professor Maria Leandro of UCLH ( consultant Rheumatologist leading researcher in autoimmune illnesses). To quote her “Car-t therapy was a big breakthrough in cancer and could be for many autoimmune conditions as well”. I wish I could post the whole article as it is fascinating and gives some hope that there could be a big changes ahead. Maybe you come write to Professor Leandro at University College London Hospital? Just a possibility of a light at the end of the tunnel…….who knows but she’s so young and this is the first time I’ve seen any chance of a breakthrough. I hope you can find the right people to help and I send you and your daughter my very best wishes.