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.
Wondering if anyone has tried to get treatment in Canada and if so, what is the best route to take?
I’m in Canada, and have been dealing with Alberta health for the last 6yrs. It’s been a big problem. At first they had hematite, which seemed to work pretty well, but they decided it was too expensive, amd as soon as someone (me) needed to regularly use the product, they switched it for the cheaper panhematin. Panhematin gave me blood clots both times I tried it, so it’s no longer an option for me.
So it’s been tough. Stuck in one province, but that province refuses to supply the medication I need. The best advice I can give is to find a specialist to advocate for you, I think because my diagnoses came from the Mayo, as soon as I got to Canada I was seen by a specialist. Before that, I spent 25yrs in and out of hospitals with doctors and nurses basically calling me a liar,
I hope you’ve had better luck than me.
I've never received any treatment as of yet, just finally made it through the steps of actual diagnosis...which takes forever in our crappy health care system. I didn't have a family doctor until recently so that didn't help. Diagnosed with AIP but I also have cutaneous reactions and the super itch, anyone else have that? The only way to stop it is to ice my arms where I usually get it.
Sorry for the strange name, I thought of it after I did a little experiment during an attack...took a pee in a mason jar, capped it and let it sit in the sunlight and it turned deep purple...crazy rainbow pee..lol.
I also took pictures of all of these things to show the specialist when I finally got an appointment...hard to argue with that.