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Anybody know anything about the disease Porphyria?
Posted: 06 November 2011 12:45 PM   [ Ignore ]
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A friend of mine (and coworker) was just diagnosed with Porphyria.  After months of stomach cramps, muscle pains, weight loss down to 86 lbs, a clean colonoscopy,  and a lot of missed work, she finally developed a rash and painful blisters over her hands, face, and body that were biopsied and gave doctors the diagnosis (a dermatologist of all specialists was the one to make the diagnosis).

She is young (24) living on her own and doesn’t have a home computer.  I have googled and googled, and can find what he can’t eat, but can’t find a decent diet that she can follow.  Basically, it just says she should eat high carbs, but then there are tons of veggies and pasta on the ‘don’t eat’ list.

Does anybody know a decent medical search engine or something?  I guess I could try the local library or hospital library. One of the symptoms has something to do with personality changes or mood swings or something, and it’s difficult to get even a healthy 24 year old to do anything for themselves as they think they are invincible,but her friends want to help because while she may ignore her own problems, she wil do anything for anybody else. 

If anybody just happens to know anything about this condition, let me know. 

By the way, before the diagnosis, she gained 16 lbs this month and is up to 102, so it seems that rest (lots of missed work and two days in the hospital) as well as making herself eat, eat , and eat may be putting this flare up to an end.  But I’m thinking she needs to be prepared for the next flare up.

She is certainly a weird disease.

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Posted: 06 November 2011 01:59 PM   [ Ignore ]   [ # 1 ]
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Never heard of it, Bebe. But have you tried WebMD? I believe they have a forum over there, too. So even if the main site doesn’t offer much help, hopefully you can get it on the forum.

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Posted: 07 November 2011 07:01 PM   [ Ignore ]   [ # 2 ]
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Someone in Scrubs had it…they figured it out b/c their urine turned purple under lights.

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Posted: 08 November 2011 03:16 AM   [ Ignore ]   [ # 3 ]
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Maegan - 07 November 2011 07:01 PM

Someone in Scrubs had it…they figured it out b/c their urine turned purple under lights.

Not certain I would hold Scrubs as an example of medical accurate advice, but you never know.

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Posted: 08 November 2011 04:20 AM   [ Ignore ]   [ # 4 ]
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I would suggest that they speak to their doctor.

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Posted: 08 November 2011 05:58 AM   [ Ignore ]   [ # 5 ]
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My only knowledge of porphyria is from a poem, which has nothing to do with the disease.  Although I do believe at least one member of the British royal family has been circumstantially linked to it.

Oooh…according to Wikipedia, it’s been linked to a possible theory behind vampires & werewolves…

As for diet-related info, I can see the problem - there doesn’t seem to be any particular thing from the quick browse I’ve done.  Maybe your friend could at least check out The Porphyria Forum and the Porphyria Foundation.

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