Health and Medical News and Resources

General interest items edited by Janice Flahiff

[News item’ The patient from the future, here today

Two thoughts on disparities highlighted in the article
What about folks who do not have the background and access to resources to self diagnose? In all countries, “developed” (as USA, most of Europe) and “developing” (asmuch of Africa, parts of Asia…)

Is it ethical for some health information to be physician/research access only?

 

From the 5 March 2014 UT-San Diego article

By 1997, those irregular heartbeats became common, leading to “hundreds and hundreds” of serious episodes, capable of causing death. She eventually received an ICD, an implanted cardioverter-defibrillator, which would shock her heart back into the proper rhythm.

Goodsell began studying her condition, drawing back on her own education. While she has no medical degree, Goodsell had been a pre-med student at UC San Diego, where she met Charles, who was studying chemistry. She dropped out after falling in love with nature during a trip to Peru.

Looking for that unifying theory, Goodsell delved into genomics, searching for mutations that could encompass her symptoms. She found it with a gene called LMNA, that codes for making proteins called lamins that stabilize cells. Defects in these proteins can cause a form of Charcot-Marie-Tooth disease, damaging nerves in the extremities and causing muscle wasting, including in the hands.

Symptom after symptom checked with the mutation. But to be sure, she needed a genetic test, and her Mayo doctors resisted.

Taking the research into self-therapy, Goodsell researched risk factors associated with the disease, examining what goes on at a molecular level. She changed her diet: Out went sugars, out went gluten and any food with additives. And out went a beloved snack.

“I used to eat bowls of jalapeño peppers. I discontinued.”

But she added certain fats she had previously avoided, such as omega-3 fatty acids and nuts, which are rich in fats.

“Cell membranes are fat, and we need fat — good fat,” she said. “I was advised to start eating fat.”

Goodsell said her symptoms improved. Control over her hands improved enough to allow her to eat with chopsticks and to resume kitesurfing.

Goodsell’s doctor wrote up her case history, listing her as co-author “because he said I had done the lion’s share of the work.” The study is to be presented at an upcoming meeting of the Heart Rhythm Society.

 

Read the entire article here

Epatients: The hackers of the healthcare world [O’Reilly Radar]

Meet e-patient Dave – a voice of patient engagement (and related resources)

 

 

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March 21, 2014 - Posted by | health care | , , , , , , ,

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