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vuhoangdc

7 year old daughter with scleroderma.

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Welcome forum!

I'm Vietnamese, My daughter has scleroderma, she is 7 years old. 

Please give me advice.

Will my daughter ever start to feel well again?

Hope someone can help.

 

 

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We really need to know a little about the symptoms and tests used in the diagnosis to be able to help you here.  If you could provide a little more information, then one of us may be able to offer a few words of wisdom.  What is making your poor little girl feel so unwell at the moment?

 

Whilst scleroderma has no cure, a lot can be done to alleviate many of its symptoms.

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Hi Vuhoangdc,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been diagnosed with juvenile scleroderma and I can understand how worried and concerned you must be feeling. The most important thing to know about juvenile scleroderma is that it is a form of arthritis, and it is important to consult a juvenile scleroderma expert. I've included a link to listed scleroderma experts,  (some of which specialise in juvenile scleroderma) however, we do not have anyone in Vietnam (if you are resident there). In that case I would advise you to try and get an appointment with the very best rheumatologist you can, in order that your little girl can receive the treatment she needs.

 

As Dimarzio has suggested, it would make it easier to try and advise you if we had a little more information from you. Over 90% of cases of juvenile scleroderma are localized, such as morphea, linear or en coup de sabre. These types affect only the skin, and not the internal organs, so it may be that your daughter is suffering from that type. We do have other members with children who've been affected and I've found a couple of threads about juvenile scleroderma:

No symptoms ANA and ACA positive

Concerned about my daughter (5years old), which I hope you'll find helpful and informative.

 

Please do keep posting and let us know how your daughter is progressing.

 

Kind regards,

 

   


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