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Coping with a Child's Chronic Illness

Author: Janey Willis. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer.
Overview of Coping with Child's Chronic Illness
Personal Stories of Children with Scleroderma

Overview of Coping with a Child's Chronic Illness

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

Exploring the impact of paediatric localized scleroderma (LS) on health-related quality of life (HRQoL): Focus groups with youth and caregivers. This is the first qualitative study of HRQoL in LS to include all major LS subtypes. PubMed, Br J Dermatol, 01/18/2020.

A family affair: Supporting children with chronic illnesses. Family connection was critical for children with chronic illnesses during hospitalization and findings highlighted the importance of sibling support as a factor promoting child and family resilience when a child is facing medical procedures. PubMed, Child Care Health Dev, 2019 Mar;45(2):227-233.

Chronic disease in children and adolescents: professional–family bond for the promotion of social support. Satisfying social support has an influence on coping with chronic disease in children and adolescents, and its proper delivery relies upon bonding and embracement. PubMed, Rev Gaucha Enferm, 2018 Aug 2;39:e20170290.

Children's Perspectives on Living With a Sibling With a Chronic Illness. The findings are used to outline how changes in family relationships often result in reduced communication and a suppression of healthy siblings' needs. PubMed, Pediatrics, 2018 Aug;142(2).

Personal Stories of Children with Scleroderma

Annabella: Mother of Daughter with Linear/Morphea Scleroderma. When I first noticed the marks on my little girl's left thigh during bath time last summer, I got a sick feeling in my stomach…

Bregan: Mother of Daughter with Morphea. I am a mother of six children. My fourth child, Bregan, who is seven years old, has just been diagnosed with morphea…

Cindy Fuchs-Morrissey: Mother of a Progressive Systemic Sclerosis Child. Our daughter Hilary has scleroderma in the form of progressive systemic sclerosis. She turned thirteen years old several days ago and will be in eighth grade for the 2003-2004 school year…

Ed: Father of a Linear Morphea Patient. One night after their practice, Erwin complained about pain in his knee joints. I thought it was just a pain inflicted by karate kicks during their sparring practice…

Georgina: Mother of Child with Morphea. Hello, I am the mother of a five-year-old child who about six months ago was diagnosed with morphea, a previously unknown illness for me…

Jo: Mother of a Child with Morphea Scleroderma. During the summer of 1999, we noticed that our daughter had a blotchy, purple-red rash all over the lower part of her left leg…

Shaz: Mother of Son with Morphea. I am writing to let you know about my seven-year-old son who has had morphea since he was five years old and has just been diagnosed with localized scleroderma…

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