Juvenile Linear Scleroderma

My 9 year old daughter has had Type 1 Diabetes for 3 years and last May got diagnosed with Juvenile Linear Scleroderma (In a line affecting her right hand, fingers and arms). As this is a rare condition I cant find anyone in my area (Aberdeenshire) who has a child with a similar condition!!! Any advice would be greatly appreciated as there is plenty of support for Diabetes but not a lot for other auto immune conditions. She takes Methotrexate injections weekly.

6 Replies

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  • Hello Debbie,

    I have Juvenile Systemic Sclerosis Scleroderma which I was diagnosed with when I was 8. I'm now 20 and at University in Aberdeen.

    My parents found the Raynaud's and Scleroderma Association really helpful for information and a chat (they run this forum and all their information and details are at scleroderma.org.uk ) - they put us in contact with families with children with scleroderma when I was first diagnosed.

    Has your daughter been seen by Dr Joyce Davidson at Aberdeen Children's Hospital (she was my doctor in child services and was fantastic) - the association or Joyce may be able to put you in contact with other families in the area.

    I was put on methotrexate when I was diagnosed - how is your daughter getting on with it?

    Hope this helps, my mum is not on here and your daughter and I have a different type of scleroderma but I am positive she would be delighted to talk to you if that would be of any help.

    Warm wishes, Hannah.

  • The methotrexate makes her sick but it does seem to be the best for stemming the progression of the disease in its active state, thanks for replying to my blog, I feel I am getting somewhere now x

  • Haven't anything of value for you, Debbie, just to say that I know RSA helped me with my numerous inquiries but I was diagnosed with raynauds @ 37 and scleroderma @ 49 + heaps of other stuff in between. My sister was diagnosed with Diabetes @ 19. She had her three boys natural birth by 1985 and that was considered amazing @ that time as most diabetics had C-Section then. Hoping all goes well for your wee girl and that RSA can help you, too. God bless. (:-)

  • Thank you for your positive reply...it's good to hear good things from others, I have struggled over the last year to find support for her but things seem to be looking up!!!

  • That's good Debbie. Keep your chin up. If I find anything @ all of use to you I'll post it here. All the best. M (:-)

  • My daughter was diagnosed with linear scleroderma of the hands and feet when she was 9 years old. She is nearly 12 now. She does not have Diabetes,and we do not live in the Aberdeen area. However, the methotrexate has been a miracle worker! When she was diagnosed, we were told that she would never regain any of the range of motion she lost in her wrists and ankles, but she has. We did physical therapy for a while, but we don't do it much anymore because the methotrexate softens her skin so much it doesn't seem worthwhile. Taking the medicine orally has upset her stomach for the 12 hours following, but even that seems better now. Best of luck to you and your daughter.

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