|Overview of Coping with Child's Chronic Illness
||Personal Stories of Children with Scleroderma
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
Dealing With Childhood Illness: 7 Ways to Invite Hope into a Seemingly Hopeless Situation. t's very easy for childhood illness to enslave an entire family. But there are also many ways to invite hope into your life during this time and keep it there. Alesia Shute. BizyMoms.com.
Talking with Kids about Health. Pediatricians recommend parents communicate a feeling of calm and confidence to a sick or injured child. "Kids learn coping skills from their parents. A child needs a parent who is in control and nurturing. PBSParents, 2010.
Children with Chronic Conditions. All children will likely have many different health problems during infancy and childhood, but for most children these problems are mild, they come and go, and they do not interfere with their daily life and development. For some children, however, chronic health conditions affect everyday life throughout childhood. University of Michigan. Your Child, 2010.
Chronic childhood illness: managing the emotional impact. In addition to the child's physical health and medical needs, you need to manage the feelings that come with all the changes and health issues. Parenting and Child Health. February, 2010.
Measuring parent-child shared management of chronic illness. Over time, most children with special health needs must become partners in their disorder management. Because most care of chronic conditions takes place in the home, parents assume significant responsibility in starting and supporting the child's role in parent-child shared management over time. GM Kieckhefer. (PubMed) Pediatr Nurs. 2009 Mar-Apr;35(2):101-8, 127.
Pediatric Psychosocial Issues and Chronic Conditions: Impact on Families. All families with or without the experience of a child with chronic illness have routine difficulties they encounter: finances, sibling relationships, child-care, parenting and marital stress, the handling of developmental milestones in their children—all while trying to maintain a normal social life. When a child has a chronic illness, all of the normal tasks of parents and families are more difficult to carry out smoothly. Jennifer Moyer Darr, LCSW. National Jewish Health. May 2008.
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…
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, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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