Porphyria Community

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Finally an answer

After 25 years of seeing doctors with symptoms I had a tonic clonic seizure. 12 days in the hospital and I was discharged home and called 3 days later with the results of the porphyria urine testing. The neurologist at the hospital thought I had encephalitis or porphyria he didn't know how to treat.

I have been out of the hospital 7 days and symptoms are returning. I received no treatment at the hospital and my hemotologist is referring me to Emory University. I trust God to keep me and at the same time I am praying that I can be seen by knowledgeable doctors that can put their ego to side to help me live well. I have reached out to UAB and Mt Sanai to get an appointment. In Georgia once you have a seizure that renders you unconscious you can not drive for 6months. Finding care for porphyria is my priority at this time.


Hi and welcome to RareConnect. My name is Tihana and I work as an online community manager here. I hope you will find the answers you are searching for. Also visit the Learn section of the community where you have relevant documents and patient groups and the Members section where you can find a map with the locations of other members of the community. You can send them friend requests and once they accept you, you contact them by private messages.

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