Hi Kat. My name is Matt. I have AIP and try to deal with all that goes along with this life-altering affliction. My friends and family attempt to support me but often lose patience. I believe this is because it is impossible for someone to fully understand the struggle. I would like to have someone to talk to who understands and can relate to how difficult this is to live with. I wish you well and will continue to check back to this forum.

Hi Kat. I'm Betsy from Mississippi and I was finally diagnosed with Variegate Porphyria in 1997 after being sick for over 20 years. My parents eventually took me to the Mayo Clinic in Minnesota, where I was diagnosed, but by that time I had permanent nerve damage and many, many scars on my skin from the reaction to sunlight. I have learned everything I can about the disease and fortunately have some good doctors now. Stay on a good diet (no Atkins or other low-carb diets!), keep glucose on hand, wear 100 SPF sunscreen and/or a hat with at least 50 SPF, try to keep stress down, don't drink alcohol, and don't take ANY prescription or OTC drugs without looking them up on the American Porphyria Foundation safe/unsafe drug list. One word of caution about that list, however: Lasix, a prescription diuretic, is currently listed as "safe" but it is not safe. Every diuretic except Edecrin (ethacrynic acid) is chemically related to sulfa drugs, which are unsafe for porphyria patients to take. I found this out by having a porphria attack after being prescribed Lasix; I mentioned it to my new pharmacist (who has her PhD in Pharmacy) and she told me about the link to sulfa drugs. I plan to contact the APF about this. For a mild attack, glucose loading (sugar, if you are not vomiting) and magnesium oxide supplements (for constipation) may avert a more serious attack that will land you in the hospital. Mine usually start with anxiety, insomnia, abdominal pain, and constipation; this is when I start drinking Gatorade or ginger ale for the sugar and I take 1000 mg of magnesium. If I start to throw up I have to have IV Dextrose in the ER. If it goes beyond that the next step is IV Panhemetin, which I have not had to have, only because I have learned how to manage the disease and have not been that sick. I hope this helps; just remember you are not alone. When I was diagnosed 21 years ago, hardly anyone had heard of it but now things are a bit better. My gastroenterologist has 5 other porphyria patients besides me, in a town of 25,000 people. So hang in there! :)

hi kat, just saw your post. haven't been on in a while.been dealing with our uninvited blood disorder. not sure how much of a chat buddy i will be, but will try to be online more as I am able..