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Originally Posted by ronda102458
Hi would appreciate anyone with info about this crazy disease to write me. I was just diagnosed recently. I have the aip type. Anyway glad to have this forum. Pleased to meet everyone!!  |
My daughter has VP porphyria. Has had it for a year. Hope your condition isn't too severe.
she is partially paralyzed due to taking so long to diagnosis. You have to stay away from triggers. Certain medicine can trigger an attack. There is a good website porphyria foundation.