Hi

[JoannaB]

I'm new on here, it's not me that suffers but my 12 year old son. He has raynauds and scleroderma and was diagnosed about 3 years ago after suffering for a few years before that. Just wondered if there was anyone else on here with a child that has the same conditions,

[debbie7]

Hi Joanne, my daughter age 9 was diagnosed with childhood linear scleroderma last May and is on methotrexate, also Type 1 Diabetic I would be interested to hear about your son as like you i dont know who has this condition as it is so rare.....

[JoannaB in reply to debbie7]

Hi Debbie, it's good to hear from you, is Linear scleroderma the type that affects the bones, there is so many types its very confusing. My son has systemic with internal problems in his oesophagus and has had it dilated twice. He used to be on Methotrexate by injection but not a great improvement, now he is on mycophenolate which is tablet form and as he has a needle phobia it's better for him. It's hard to know what the future holds, i would be interested to know how it affects your daughter x

[living-the-dream-ssc-ray]

Hi Debbie and Joanna ! ah so sorry to hear about your children !

I was 24 when I was diagnosed and I thought that was young ! I had various treatments at the start, 15 years ago, including methotrexate, but it was 2g mycophenolate daily regime which stabalised me.

After taking it for about 5 years, I gradually reduced the dose, and have been tablet free for 8 years in relation to my scleroderma.

I am very disciplined with my skin care regime - bathing in Oilatum plus and then moisturising with Hydromol cream, and then 30mins later I put Paw Paw lotion on my hands, face and knees, having used the soap in the bath. My skin is the best that it has been since my diagnosis !

I am currently taking Bosentan for my Raynauds, along with being dressed as an eskimo for most of the year !

I hope my story helps you and your families..... so young ....

Have you checked the Raynaud's and Scleroderma website to see if they have any publications on childhood scleroderma ?? I think there may be a leaflet available ?!

Love and blessings to you both