Juvenile scleroderma

Information and support for parents of children with scleroderma.

Discussions

Pain in hand. How can I help.

MikeyP2
  • By MikeyP2 · New reply April 20, 2011
  • 5 replies
  • Hi Sierra is 10. She has scleroderma in her right hand and is in alot of pain everyday. Her dr has her doing therapy 2 to 3 times a day. Is pain normal with this? It hurts her to write in school and doing ...

What happens in the long run with this?

MikeyP2
  • By MikeyP2 · New reply April 16, 2011
  • 25 replies
  • Daughter has the localized scleroderma, she was Dx 1 and a half months ago. Not sure what all is going to happen, She is on meds for this. What happens after she goes off the meds, etc ...

scleroderma

nora-H
  • By nora-H · New reply April 16, 2011
  • 9 replies
  • i need somebody to talk to about my brother he is 14 years old and have scleroderma and we do not know what to do at all we went to 3 dactors and 2 of them said it is scleroderma but they did not order ...

9 year old with systemic scleroderma

chasingmybliss
  • By chasingmybliss · New reply March 7, 2011
  • 8 replies
  • So I have a nine year old niece Jayla that was diagnosed with systemic scleroderma a year ago. Her diagnosis started out as MCTD when she was 6 then morphed to lupus and now definitely scleroderma. She ...

HELP, PLEASE!

haidee92
  • By haidee92 · New reply February 16, 2011
  • 5 replies
  • My cousin's 9 year old daughter has been diagnosed and the doctors have given up on her. They say she will die soon. However, the little girl lives in Cuba and they do not have the necessary resources ...

Linear Scleroderma vs polio

jamiebailey
  • By jamiebailey · New reply January 13, 2011
  • 2 replies
  • Has anyone heard of any research done on linear scleroderma being caused by the polio vaccine ...

My 4 year old daughter with scleroderma

Konstanse
  • By Konstanse · New reply January 4, 2011
  • 18 replies
  • Hello, I joined here today because of my 4 year old daughter which have been diagnosed with scleroderma. The hospitals here in Norway have little experience with this disease, and we are really worried ...

Is Scleroderma hereditary?

Carri66
  • By Carri66 · New reply October 20, 2010
  • 14 replies
  • I have a 14 yr. old stepdaughter, whose real Mom passed away from Scleroderma & Septecemia. I have no clue about signs & symptoms to look for , if it is hereditary. Any info. would be greatly appreciated ...

Handy Hints for hospital visits.....

Strongone
  • By Strongone · New reply August 1, 2010
  • 2 replies
  • # Be creative with your hospital visits. Make up a great story with make believe charters or family and friends about what you’re going to do that day, with your child. Pretend you are going on this ...

Newly Diagnosed 7 Year Old Son

LaurenAnne
  • By LaurenAnne · New reply July 1, 2010
  • 23 replies
  • Hi, I have a 7 year old son who has been newly diagnosed with linear morphea/localized scleroderma on his scalp. He took prednisolone for 6 weeks and our doctor has tapered him off this medication. Currently ...

Pediatric Rheumatologists

rj161
  • By rj161 · New reply June 24, 2010
  • 12 replies
  • Hello- I am a 16 year old who is desperately trying to get a diagnosis for a mysterious illness. The one disease that keeps popping up as a strong possibility is systemic scleroderma, but I don't really ...

Methotrexate question-need help

kirirae
  • By kirirae · New reply April 27, 2010
  • 31 replies
  • Hello, my 11 year old daughter was diagnosed last year. We realized something was wrong when she tried to do a cartwheel and her arms wouldn't hold her up. We asked her what was wrong and she said her ...

Something I haven't read here yet

Daubs
  • By Daubs · Posted April 6, 2010
  • 0 replies
  • I was DX SD when I was 11 yrs old. It was in my left arm and stopped at my vaccination. It seemed to go away except for it left my arm shrunken and my arm has always been crampy. I am now almost 60. All ...

Need someone to talk to?

StaceB
  • By StaceB · New reply March 28, 2010
  • 5 replies
  • Well, Hi! I'm Stacie. I developed Linear and Morphea when I was 4 years old and grew up with the disease. I'm currently 17. The Linear covers my entire right side and the Morphea is on my back. I'm on ...

Scleroderma Conference in July?

Philsmom
  • By Philsmom · New reply March 22, 2010
  • 6 replies
  • I thought I'd check to see if any of you who deal with Juvenile Scleroderma of any type plan to attend the Scleroderma conference in July in Boston. I'm trying to decide if it would be of any value since ...

New and in need of any and all information/suggestions

vixnfaith
  • By vixnfaith · New reply February 7, 2010
  • 26 replies
  • Hello all, I just joined because my 13yr old daughter was recently diagnosed with systemic scleroderma. I posted a journal under another topic and though I might repost here. She has raynauds and her ...

H1Ni shot and risk more out breaks Schlerderma Morphea

Concernedmom8
  • By Concernedmom8 · New reply December 31, 2009
  • 8 replies
  • What are the risks of getting the H1N1 shot and more problems with Schlerderma Morphea in children ...

Newly Diagnosed: Morphea/ Linear Scleroderma

Jynuine
  • By Jynuine · New reply November 5, 2009
  • 13 replies
  • Hi! My 10 yr old daughter was just recently diagnosed with Morphea/ Linear Scleroderma after 3 years of no answers on the mysterious painful rash on her neck. At first it was raised and ran along her ...

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