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.
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 150mg of tramadol 2-3 times a day and only use the oxycodone once in a while when the pain is worse than normal. I am just wondering if anyone takes anything for pain/has any suggestions as I would like to not have to take anything.
Another major question I have is about pregnancy. As I am getting married it has been a topic recently and I spoke with my doctor who told me it would be best to have children before the age of 30 if possible. He says its because it will be very difficult for me and the younger I am, the stronger my body is. Has anyone heard anything different? Or know of anyone that has had children? I have done a lot of research and I am not so worried about the attacks as it appears I can get hematin treatments without harming the baby, but I am more worried about not being able to take anything for my pain and the time crunch!
If anyone has any information I would greatly appreciate it! And I am happy to have found this group!!
I have 3 problematic children and the 2 youngest were tested positively for coproporphyria and the genetic test determined that they received it from me. (the 3rd child hasn't been tested yet.). I'm asymptomatic and would not suspect having porphyria but my 2 children have the mutation and are very problematic. They are very young and are not supposed to be symptomatic in their age but something brings them up to ER and they rapidly recover from IVs with glucose. I'd like to hear from other parents of their experience of having porphyria affected children. Maybe maternally inherited porphyria is worse than if you inherit it from your father. Because females carry children and breastfeed them and who knows if some additional damage can happen during that time.