Porphyria Support Group
The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). The hepatic porphyrias primarily affect the nervous system, resulting in abdominal pain, vomiting, acute neuropathy, seizures, and mental disturbances, including hallucinations, depression, anxiety, and paranoia.
Genetic & Metabolic
Porphyria Support Group

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Hi everyone. I'm sure this sounds familiar - I've been trying for 5 and a half years to find out what's wrong with... READ MORE
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Hi Everyone, I have been suffering horribly from gastric distress, and neuropathy and I have every gastric test known... READ MORE
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Wondering if anyone has tried to get treatment in Canada and if so, what is the best route to take?
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Hello everyone,I was a fitness coach until I was about 35, when symptoms began to override my ability for any type of... READ MORE
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By no means am I being disrespectful or downing or anything of this factor, but I don't understand this?My wife and I... READ MORE
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I just found daily strength and this group. I have coproporphyria,been diagnosed for twenty years. just wanted to offer... READ MORE
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Please, I need a chat buddy to talk to..........I'm IN Massachusetts, but I feel like I'm on the moon........only... READ MORE
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hi. am a carrier of the verigate gene of Pophyrira just wondered if there was anyone out there in the UK with the same... READ MORE
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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... READ MORE
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Does the accumulation of Porphobilinogen happen only during attack or throughout life as it is to do with the genetic... READ MORE
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Hi my name is Thomas Alexander. I was first diagnosed with AIP the PCT. Now my doctors are considering HCP and VP. My... READ MORE
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Hi, my name is Kelsey. I am 17 and I was recently diagnosed with AIP. The past 4 years of my life have been complete... READ MORE
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Hi, My name is Gabrielle Godbille. I am an intern with Rare Genomics Institute and RareShare this summer. We are... READ MORE
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glad everyone is here i am in oregon and my insurance covers DNA i have billing codes but how to get done from there... READ MORE
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Currently my scariest symptom is SVT, Supraventricular Tachycardia. It has actually been caught on ECG several times,... READ MORE
