I just found daily strength and this group. I have coproporphyria,been diagnosed for twenty years. just wanted to offer support and maybe learn something I may not know.
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Hi everyone! I am a 26 year old female and was diagnosed with AIP almost 6 years ago. I was hospitalized for a month and a half before diagnosis and was completely paralyzed. I am lucky to say that through a lot of rehab I was able to make almost a full recovery but I stuggle with chronic nerve pain. I was taking oxycodone every 4 hours to manage the pain but I have weened myself off. I now take...
Does the accumulation of Porphobilinogen happen only during attack or throughout life as it is to do with the genetic deficiency of the porphobilinogen deaminase. I have a hypothesis that the Behavioural/neurological/physiatric Disorders in known cases is a lifelong phenomenon rather than during an attack.Can anyone throw more light on this from their own personal experiences or research or...