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)
New developments in juvenile systemic (jSS) and localized scleroderma (jLS). The new classifications, developments, and adaptations of the outcome measures for certain organ involvements whereby progress has been made regarding pediatric patients. PubMed, Rheum Dis Clin North Am, 2013 Nov;39(4):905-20.
Short And Long Term Outcome Of Linear Morphea (LM) In Children. Despite a wide range of therapeutics reported in LM, there is currently a lack of consensus on the optimal therapy. LM needs prolonged monitoring as the disease could have very long periods of quiescence followed by reactivation. PubMed, Br J Dermatol, 2013 Sep 6.
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…
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Michele Maxson, John Moffett, Joan-Marie Permison, John Roberts, Margaret Roof, and Maryellen Ryan.
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:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
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