Acute Intermittent Porphyria

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ScottWatson80
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@scottwatson80
MightyTogether 2y
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Claire Richmond
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Acute Intermittent Porphyria
3y

Questioning if I'm 'Sick Enough' as Someone With Chronic Illness

I live with rare neurological condition called acute hepatic porphyria and the fight I have with my body is constant. I don’t ever think I’m sick enough. I will actively choose not to seek medical help, even when I am in the throes of a life-threatening attack. I imagine this idea of minimizing severe symptoms [...]
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Viki
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@vikikriek
AcuteIntermittentPorphyria 3y

Any one with porphyria varigata #


#AcuteIntermittentPorphyria
Porphyria #

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Melissa Foster
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@aunurse
AcuteIntermittentPorphyria 4y

Is anyone active on this site with any form of the Acute Hepatic Porphyrias? I have finally been diagnosed and am looking to connect with others.


#AcuteIntermittentPorphyria

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Claire sitting on a bed near an infusion machine in the hospital.
Claire sitting on a bed near an infusion machine in the hospital.
Claire Richmond
 • 
Chronic Illness
4y

How to Know It’s Time to Stop Working Full-Time Because of Chronic Illness

I have a long-term severe and chronic metabolic disorder. Most days, I have a few good hours. And earlier this year, my condition stopped me in my tracks. Up until this point, I derived my worth from my career, from my income, from the community involvement, from the sheer amount of valuable projects I could [...]
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Pamela Brown
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@pamelabrown17
AcuteIntermittentPorphyria 4y
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girl with umbrella facing a lake and clouds in the sky
girl with umbrella facing a lake and clouds in the sky
fairez
 • 
Acute Intermittent Porphyria
5y

Why I Prefer the Cloudy Days With Porphyria

Usually, when someone wins a lottery against high odds, it’s a good thing. Perhaps they win cash, a holiday vacation, or a special prize. In my case, the prize was a rare disease known as porphyria cutanea tarda, otherwise known as PCT. While the odds differ depending on which research is conducting the census, it [...]
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Alysia Durant
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@alysiadurant
5y

Does anyone have acute intermittent porphyria?

I have it and it took years to get diagnosed and some treatment but even drs treat is like we have a drug addiction. When the meds they give us help have some what a normal tandem now the government wants to take that away . I’m blessed that my dr cares more about his patients then what the government thinks!

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