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New Member, Vicky

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#1 vicky967



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Posted 07 February 2010 - 01:07 AM

Hi every one I have been looking at your forums and the support is great. My 20 year old son is in the early stages of being diagnosed with Scleroderma/ Morphea after being wrongly diagnosed last Feb with another disorder of the skin. In December it was decided he would be fast tracked for a biopsy as it has spread rapidly over his torso, and now is on his face. As yet we have to wait to see which type he has which I can honesly say I'm dreading the waiting is torture but we go on the 18th of Feb for the biopsy so fingers crossed it won't be to long of a wait after that. I think the support on here is great and I hope to get my son to join as he is having problems with body image ect it will be good for him to be able to talk to others with the same condition.
Its great to be a member

#2 Amanda Thorpe

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Posted 07 February 2010 - 07:03 AM

Hello Vicky

Welcome to the forum although I am sorry it's because your son may have scleroderma.

Getting a scleroderma diagnosis is not something anyone wants but having a diagnosis enables you to know exactly what you're dealing with and also means that the right treatments can be given. There's more good news, morphea, the localised form of scleroderma, does not involve the internal organs and is never fatal.

As for the cosmetic issue it's not an easy one to come to terms with. We recently had a topic about masking skin involvement and although the participants are all female the issue of a changing appearance effects many and is hard to come to terms with.

Please let us know how the biopsy goes and its results.

Take care and keep posting.
Amanda Thorpe
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International Scleroderma Network (ISN)

#3 vicky967



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Posted 08 February 2010 - 04:00 AM

Hi Amanda,

Thank you for your kind words. I will keep you informed on the biopsy and results. I am hoping it is only localised morphea. We should know soon. I think this is a great site and the people are so supportive, its like a little family of big 1 even.

Thanks once again.


#4 Sweet


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Posted 09 February 2010 - 07:09 PM

Hi Vicky,

Love to you and your son. Welcome to the forums. The uncertainty, and watching changes in your son can cause so much anxiety. I certainly know the feeling. I will be anxious to hear the results. Do keep us posted, and don't forget to take a deep breath once in awhile.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 Shelley Ensz

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Posted 10 February 2010 - 09:39 AM

Hi Vicky,

Welcome to Sclero Forums! You are being promoted into the Main forum now, so I am moving this message thread there.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Snowbird


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Posted 10 February 2010 - 11:03 AM

Hi Vicky

Wanted to say hello as well and wish you both good luck with your sons biopsy/tests. It's so difficult at that age without having issues that it is certainly understandable how he is feeling self-conscious. Hopefully when you get some answers, it might somehow help him feel better and perhaps overall things will begin to settle down for him. He's likely very scared about what it might or might not be too...being in limbo without a diagnosis can also be hard on someone as I'm sure you know as a mother. Let us know how he makes out.
Sending good wishes your way!