Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

Patient Perspectives: Crowdsourcing, Ice Cream, a Fourth Devastating Diagnosis, and Medication Side Effects

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Wikipedia is a perfect example of crowdsourcing, "the act of contracting out problems to large groups rather than tapping individual experts." Red Maxwell, founder of the JDRF online diabetes community juvenation.org and blogger on Dadybetes, believes this same process group problem solving is the key to better diabetes care.  He says, "f you took 50 moms who take care of children with diabetes, and 50 people who live with diabetes, their combined knowledge would be greater than the smartest endocrinologist in the world."  Here's proof.  Share your own insider knowledge with others'because we don't know what we don't know.

Can a diabetic have good old fashioned ice cream?  Just ask D-Mom Leighann Calentine whose daughter has Type 1 diabetes. They both love ice cream, yet despite her daughter's illness, Leighann doesn't opt for sugar-free versions. Why not? See her side-by-side comparison of a popular brand's options the results may surprise you. Hint: besides the sugar, there's more information on these nutrition labels than one might expect.

Trisha Torrey was shocked when her friend (and our Center for Advancing Health president and founder), Jessie Gruman, received her fourth cancer diagnosis. When Jessie went on to write a 5-part blog series describing her experience, Trisha wanted to share them with her Patient Empowerment readers. Jessie's story begins with Another Devastating Diagnosis to Face and takes us through Friends, Fatigue and the Slow Slog Back. Of the series, Trisha says "Jessie and her husband have shared universal truths and concerns about today's healthcare system as it applies to real human beings."'  What have you learned from your own or a loved one's experience with a devastating diagnosis? Share your story here.

Known only as "WarmSocks," this rheumatoid arthritis warrior describes a recent run-in with medication side effects, including unusual bruising, peeling skin and chest pain.  Frustrated by the lack of guidance in coping with them, she says, "Different meds from different doctors over a number of different appointments for multiple years, and somewhere along the line, all those potential side effects start to blur together'I really have no way of evaluating what's serious and what isn't'There needs to be a way to keep track of potential side effects and to know which of those are considered normal and which ones need to be addressed promptly."  For Prepared Patient information on managing multiple medications, click here.

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CFAH Staff   Promote your Health   Seek Knowledge about your Health  


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