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Posted by Lynn on December 20, 2000 at 05:49:35:

In Reply to: Re: PORPHYRIA posted by Ben on October 07, 2000 at 21:01:11:

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: : : Hi Does anyone here have any info on this disorder and its symptoms and diagnosis...Any info would be helpful. Thank You so very Much...Betty.

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: : Hello. not sure if my info will help but i would like to try. Im still learning about this disease myself. Well for starters i have (AIP) Acute Intermittent Porphyria. My symptoms are stomache and intestinal spasms. So far the only help i can get according to my Dr. is by having a large amount of blood removed from me each month. Porphyria produces too many porferin cells and causes the blood to become too thick. Im very sensitive to sunlight and any very bright lights. Many medications, alcohol, hormone meds. stress, and pregnancy can all lead to an attack. The attacts are i remission right now but was told that it will come back when i go through menapulse.
: : If you can get more info. then this please let me know. Im still known as a Guinny pig for the Drs.with this disease.
: : Dawn

: I have AIP, diagnosed at age 15, am now 61. I have been told by physicians that carbohydrate loading is helpful, and that I should stay away from excessive intake of protein, such a high protein diet.

:I have Hereditary Coproporphyria, diagnosed when I was 9 years old, now 30. My symptoms are stomach cramps, nausea,stomach problems i.e diarrhoea or constipation, occasional muscle weakness and occasional depression. I also have a problem with the nerves in the lower spine which affect my bladder resulting in me having to visit the loo often.During ac acute attack I was observed for psychotic behaviour as this can occur. I was advised not to have children and was sterilised but have since had this reversed as my gynae is confident that I will be ok during a pregnancy. I have been in remission i.e no acute attacks, for 8 years. The other symptoms persist. I have also been advised to carbo load as this provides energy to my body to try and metabolise as many porphyrins as possible. Dieting and fasting are not options! Otherwise I have little trouble with it but have had acouple of close calls where medication is concerned, receiving the incorrect medication because so little is known about Porphyria.

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