Juvenile scleroderma

Information and support for parents of children with scleroderma.

Discussions

Disabling Pansclerotic Morphea

JPFamily
  • By JPFamily · New reply April 10, 2014
  • 6 replies
  • Isabella is my 3 plus year old daughter. She suffers from a rapidly progressive localized scleroderma/morphea called Disabling Pansclerotic Morphea affecting her face, scalp, trunk, arms and legs, which ...

10 year old Linear Morphea/Scleroderma

LinearMorpheaMom
  • By LinearMorpheaMom · New reply March 11, 2014
  • 27 replies
  • My 10 year old was just diagnosed with Linear Morphea/Scleroderma. He has the problem on his skull/forhead. We are confused about which treatment to do. The doctor wants us to put him on Methotrexate ...

ANA positive

purplemom8582
  • By purplemom8582 · New reply February 19, 2014
  • 1 reply
  • Do all children with localized scleroderma test ANA positive? Does anyone know what this means ...

Linear scleroderma en coup de sabre blood vessels ear

olivemom
  • By olivemom · New reply February 12, 2014
  • 1 reply
  • Does anyone else have blood vessel abnormalities with their en coup de sabre? My 6 yr old was diagnosed with LS de sabre but truth be told her first symptom was telangiectasia or blood vessel abnormality ...

Inspiring young man who grew up with En Coup de Sabre Morphea

skidamarink
  • By skidamarink · New reply February 1, 2014
  • 1 reply
  • Case McCoy was diagnosed at 4 years old and was in treatment until he was 12. He is now a quarterback for the University of Texas at Austin. Hook'em Horns! http://upliftingathletes.wordpress.com/2 014/01/06/2014-rare-disease-champio ...

Starting Methotrexate

ladywolf029
  • By ladywolf029 · New reply February 1, 2014
  • 28 replies
  • My four year old was recently diagnosed with Linear Scleroderma. After several dermatologists told us it was eczema, we finally met with a Pediatric Dermatologist a few months ago and they advised he ...

5 yr old wn coupe de sabre

amzaa2669
  • By amzaa2669 · New reply December 26, 2013
  • 1 reply
  • My daughter was diagnosed last winter with this disease. She has been on oral steroids, plaque nil, and methyltrexate. The line become active again by turning pink so the md decided we had to start pulse ...

Disabling Pansclerotic Morphea

JPFamily
  • By JPFamily · New reply December 24, 2013
  • 4 replies
  • My 3 years old daugther has been diagnosed with morphea, and after the first month of treatment 1) 0.55 ml Methotrexate (once a week). Last week they increased the doses to 0.57 ml 2) 42 ml Methylprednisolone ...

Brain Lesions -Antibiotics & en coup de sabre

KSeevers
  • By KSeevers · New reply December 5, 2013
  • 10 replies
  • Below is a brief description on our 8 year old son Michaels case of Morphea and today I have the AWESOME privilege of telling everyone that today his MRI showed NO signs of his brain lesions and I believe ...

can someone help?

mistyk4
  • By mistyk4 · New reply November 16, 2013
  • 49 replies
  • My 4 year old daughter has been diagnosed with diffuse systemic sclerosis. Invmarch she was admitted to a children's hospital for chf and dilated cardiomyapathy. She was there for a month we came home ...

What doc is considered the best??

Kbstack
  • By Kbstack · New reply November 16, 2013
  • 19 replies
  • So we are looking to get a second opinion for our daughter 9, who was diagnosed with systemic scleroderma. I figure if we are gonna travel, might as well make it worth it and see the top dog. I know systemic ...

Damages to skin after treatment

nana135
  • By nana135 · New reply November 7, 2013
  • 6 replies
  • My grand-daughter of 3 has recently been diagnosed with Linear Scleroderma with Morphea. It began on her right finger and within 2 weeks had reached over her wrist. By the time we had the diagnosis and ...

Linear scleroderma en coupe de sabre

amzaa2669
  • By amzaa2669 · New reply October 22, 2013
  • 5 replies
  • My 5 yr old has been on methotrexate and plaquenil since nov. 2012. It seemed to be helping just fine. The line got lighter and pinkness went away. But still the line was there. I just noticed today that ...

Answers for my 11 yr old son, plz.

lncox
  • By lncox · New reply October 8, 2013
  • 3 replies
  • 3 yrs ago my son got a reddish knot a 1/4 of the way from his neck on the side of his spine. His PCP did xrays and bloodwork for the next 2 yrs. Treating him for staph, fungus, fatty tissue, etc. Because ...

My 5 yr olds linear scleroderma en coupe de saber is spreading quickly!!

amzaa2669
  • By amzaa2669 · New reply September 18, 2013
  • 7 replies
  • It s active again despite the medical treatment. The scar is getting wider on her forehead. Md is suggesting I.V. Steroids...anyone have any advice??? She's got such a beautiful face and its deign deformed ...

Horrible doctors!

Curiel
  • By Curiel · New reply September 12, 2013
  • 8 replies
  • Every time I go to see my doctor he denies me treatment! He thinks I am pretending to be sick and tells me "I am not disabled or sick." He says I need a "new set of eyes" to see me. I am on medicaid and ...

Did you/your child ever have Meningitis?

Kim1957
  • By Kim1957 · Posted September 3, 2013
  • 0 replies
  • I just responded to a discussion started by "jneeley2012" questioning if Meningitis could have any link to Scleroderma. It was very interesting that some of us did have Meningitis as children. I was just ...

new meeting fresno, ca

lcdedmon
  • By lcdedmon · New reply August 27, 2013
  • 2 replies
  • I am a survior of juvrnile scleroderma and I taught with disabilities for 30 years. I got scleroderma at 18. I had the symptoms sooner than 18. I am trying to start a group in Northern Ca for patients ...

12 yr old son with linear scleroderma and Lupus over lapping

Raeanne7833
  • By Raeanne7833 · New reply July 18, 2013
  • 4 replies
  • My son was diagnosed with linear scleroderma with lupus overlapping. He first started showing signs when had was 10 months old. At that time he developed a rash. We got the rash under control and then ...

New line

amzaa2669
  • By amzaa2669 · New reply July 4, 2013
  • 3 replies
  • So i went to the rheumatologist yesterday for my 5 yr old daughter. Showed her the new line on her forehead and she said shes not gna change her medicines, that i should see a dermatologist and get their ...

Things you can do

Support the Scleroderma Foundation

Help the Scleroderma Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Scleroderma Foundation

Discussion topics

From the Scleroderma Foundation

Community leaders