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Parents of Kids and Teens with Scleroderma

About the Group

Navigating the journey of scleroderma with your child can be uniquely challenging. We understand the need for a supportive community and the necessity of essential information to guide you through the daunting world of scleroderma. Whether your child or teen is dealing with localized scleroderma or systemic sclerosis (SSc), connecting with other parents who share the same journey is profoundly beneficial for both you and your child. All caregivers are welcome. This group meets twice a month on the first Thursday and the third Saturday of the month. 

Mother smiling with her chronicaly ill child
Why you should join:

Are you struggling to understand your child's scleroderma diagnosis? Are you seeking a supportive community of fellow parents and caregivers looking to give their children the support they need? Are you curious about getting connected with a pediatric rheumatologist? Are you looking to inform your community about your child's needs?

Participants can expect to gain
  • New coping strategies to maintain your mental health as a caregiver.

  • Techniques to inform your child's school about scleroderma.

  • A safe space to connect with others who understand what you're going through

  • Connections to doctors more knowledgeable about scleroderma. 

  • Methods for building a robust support network for you and your child's needs. 

  • Knowledge of being your child's advocate, both at the doctor's office and beyond.

Children with Scleroderma

Parents talking with their child

About Pediatric Scleroderma

Scleroderma occurs most frequently in adults, however, scleroderma can occur at any age. Localized scleroderma is the most common form of the disease, especially in children and young people. About one-third of those with scleroderma will develop the systemic form of scleroderma (SSc).

 

Localized scleroderma will involve patchy skin changes that stay local to the skin. Localized scleroderma does not involve internal organs excluding the esophagus. However, scleroderma presents differently in each patient. Children are growing, and scleroderma may present differently than fully-grown adults. Furthermore, children have a tendency to adapt to their circumstances. Therefore, diagnosis is often difficult. Caregivers should seek a pediatric rhuematologist or dermatologist for guidance and diagnosis. 

  • Pediatric Rheumatologist: a physician who trained in pediatrics and then completed a fellowship in pediatric rheumatology to be able to diagnose and treat inflammatory musculoskeletal disease, including autoimmune diseases like scleroderma.

2024 Meeting Schedule

  • Thursday Meetings 

    • January 4, February 1, March 7, April 4, May 2,  June 6,  July 11, August 1, September 5, October 3, November 7, December 12. 

  • Saturday Meetings

    • ​January 20, February 17, March 16, April 20, May 18, June 15, July 20, August 17, September 21, October 19, November 16, December 21. 

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