| Prognosis and Mortality
When any form of scleroderma (either localized or systemic) occurs in children, it is also called Childhood Scleroderma or Juvenile Scleroderma.
Nailfold capillaroscopy in juvenile rheumatic diseases: known measures, patterns and indications. This review outlines the potential benefits and limitations of nailfold capillaroscopy for routine care in paediatric rheumatology. PubMed, Clin Exp Rheumatol, 2014 Nov-Dec;32(6 Suppl 86):S-183-8.
Juvenile Systemic Sclerosis Prognosis. Although a severely debilitating disease with significant morbidity and mortality, the prognosis of children with JSSc has been reported to be better than in adult patients with systemic sclerosis. Medscape.
For UVA1 treatment, first contact your doctor to see if it they will recommend it for you. It is not used for lichen sclerosus that is on the genital area. If they recommend and prescribe it for you, try to find UVA1 facilities near you. Some dermatology offices (usually large offices or with major health centers) have UVA1 equipment (not UVB). It may also be possible to buy UVA1 phototherapy equipment for home use. It is manufactured by Daavlin and distributed worldwide. Home users must be monitored by a physician, who will prescribe the necessary dosage and monitor for possible side-effects, such as skin cancer.
Fibrocell’s FX-013 Therapy Wins FDA Rare Pediatric Disease Designation for Localized Scleroderma. The U.S. Food and Drug Administration (FDA) has granted Rare Pediatric Disease Designation to FX-013, a Fibrocell gene therapy candidate to treat children with moderate to severe localized scleroderma. Scleroderma News, 06/13/2017. (Also see Clinical Trials)
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: