Stories about: chronic illness

Experience Journal: Coping with chronic illness

coping with chronic illness in childhoodThe Experience Journals were created to promote healthy coping strategies for children, teens and families facing adversity and chronic illness. They were founded by Drs. David DeMaso and Joseph Gonzalez-Heydrich of the Boston Children’s Hospital Department of Psychiatry, and are a collection of stories and experiences from patients and families about what it has been like to live with a significant physical and/or emotional condition.

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These stories represent the collective wisdom of children, teens, parents and health care providers. Here are some of their stories, in their own words.

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When your sick child isn’t a child: my adult daughter gets the diagnosis of Crohn’s disease

My daughter was diagnosed with Crohn’s disease last week.

This is a tough diagnosis to get. Crohn’s is a type of inflammatory bowel disease. There are lots of good treatments and reasons to be optimistic, but it is a disease that can bring pain and risk—and it is forever. There is no cure.

Michaela’s had stomach problems for years that have never been fully clear, despite various appointments and tests. Things had seemed better, although she still had vague complaints that came and went. At the end of her winter college break, she told me about some new symptoms. I thought about calling her pediatrician and the pediatric gastroenterologist she’d seen, but Michaela is 20 years old. It was time, I decided, to officially move her out of pediatric care and into adult care. With the help of writing colleague and All-Around Great Person Dr. Lori Tishler, she quickly got appointments with an internist and gastroenterologist at Brigham and Women’s Hospital, right near her college campus.

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The underreported pediatric stories of last year

Children_With_DisabilitiesChildren’s Judith Palfrey, MD, FAAP, president of the American Academy of Pediatrics writes about the most urgent children’s health stories that were neglected by the media last year:

This past year, the newspapers and blogs were full of stories about H1N1, obesity, autism and health care reform. These are all important and newsworthy topics, but there are other stories that are perhaps less flashy, but nonetheless have worth on their own merit.

As far as I am concerned, one of the biggest of these is the story of our adolescents and young adults with chronic conditions and disabilities. Quietly and without fanfare, as a result of the great innovations of medicine and surgery, the numbers of adolescents and young adults with significant health problems has been rising in the United States.

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