Coping with a Child's Illness
Patient and Caregiver Stories
The most important thing to know juvenile scleroderma is that it is a form of arthritis, and it is important to consult a juvenile scleroderma expert.
When any form of scleroderma (either localized or systemic) occurs in children, it is also called Childhood Scleroderma or Juvenile Scleroderma. It is a form of juvenile arthritis. (Also see What is Scleroderma? and Types of Scleroderma)
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. They do not reduce life expectancy in any way. Less than 10% of the cases are systemic scleroderma, such as diffuse or limited systemic sclerosis.
Less than 10% of the cases are systemic scleroderma, such as diffuse or limited systemic sclerosis. Localized scleroderma does not "progress" into systemic sclerosis, and only very rarely do the two diseases occur together.
Update on juvenile systemic sclerosis. Currently, treatment approaches are based only on adult data, and problems exist in extrapolating these data to a pediatric population. PubMed, Curr Rheumatol Rep, 2015 Mar;17(3):491.
Multimodality Thoracic Imaging of Juvenile Systemic Sclerosis: Emphasis on Clinical Correlation and High-Resolution CT of Pulmonary Fibrosis. Common thoracic findings in juvenile systemic sclerosis and treatment decisions and prognostic assessment are directly related to imaging findings along with clinical evaluation. PubMed, AJR Am J Roentgenol, 2015 Feb;204(2):408-22. (Also see Diagnosis of Scleroderma Pulmonary Involvement)
Books for Juvenile Scleroderma features the ISN's Voices of Scleroderma book series, which is base on our sclero.org web site! ISN.
Juvenile Scleroderma Experts. It is very important to consult a scleroderma expert for the proper diagnosis and treatment of scleroderma, because it is a rare disease. Treatments are better at preventing progression than healing any damage that has already occurred. ISN.
Prognosis for Juvenile Scleroderma. Localized scleroderma, such as linear, morphea, en coup de sabre, do not reduce a person's life expectancy. For children with systemic sclerosis (scleroderma), such as diffuse or limited/CREST, the survival rate is better for those who have adult onset. ISN. (Also see Types of Scleroderma)
Prognosis: Localized (Linear/Morphea)
|Prognosis: Systemic (Diffuse/Limited)|
| Prognosis and Mortality
Coping with a Child's Illness can be quite challenging, but with the right resources, knowledge and attitude, it is possible to continue to maintain a sense of normalcy for the child, the caregivers, and the family. ISN
Allen's Mom: Son has Scleroderma With his tightness of skin he has a very hard time bending, walking up the stairs and for the most part he cannot walk for more than a few minutes without his legs giving out…
Anita G: Localized Scleroderma This also started as a small spot that I thought was insignificant, but as time went on, it grew, along with my symptoms…
Chris S: Mother of Linear Morphea Patient Whatever it was, I knew it should not be there…
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: