My name is Kimberly Dixon. I have suffered from Porphyria for 19 years now. I spend 3 to 10 days a month in the Hospital EVERY month!!! This is very interesting to know that I’m not the only one. My symptoms are severe abdominal pain, vommiting, dehydraytion and Photosensetivity, also I have occasional Blisters and scars. I didn’t know that Garlic could be harmful to my condition and I LOVE Garlic!!! My Doctors are soooooo over me, it’s kinda’ like if ya’ don’t get better or ya’ don’t die, they don’t like ya’ anymore… My question is, what can I do to make it better. Doctors don’t have a clue and I don’t either, so what’s a girl to do???
If anyone out there knows something that I don’t, PLEASE let me know… I’m desperate!!! :smack:
I’m new at this, so help me out ya’ll, PLEASE!!!
I’ve just started Phlebotomy Treatments and so far, nothin’ has happened or gotten better. I have been havin’ Pan Hematin Treatments for years with NO sucsess… I’m open to all suggestions… And by the way, I don’t have fangs and I don’t crave blood… HELP!!! PLEASE!!!
GOD Bless
Kimberly Dixon
Hi, Kim! Glad to meet you. Just FYI, when you post to this particular column, you should include a link to the article you’re commenting on. In this case, I imagine it is THIS one, about porphyria.
Not having personal experience with porphyria, I have nothing to offer but my sincere sympathy and good wishes. Just so you know, you may have a hard time getting info on specific medical conditions here because it’s so easy to slip into the area of medical advice, which is verboten here.
Keep on coming!
Christine
Damn damn damn. Count on me to include a bad link every time. Help, anyone?!
Try this, porphyria.
Hi Kim, and welcome to the boards. Porphyrias belong to a class of diseases called inborn errors of metabolism, where genetic defects cause proteins or enzymes to misfuction, or not function at all. There are 7 enzymes involved with creating heme (which is then attached to a protein making hemoglobin), and if one of them is defective, a porphyria results. Unfortunately, there isn’t much you can do, except to avoid the triggers that set of an acute attack (garlic, alcohol, strong light, black lights, and possibly iron-containing foods). I’m most familiar with the labwork involved, and not so much with the treatment side of things. If you haven’t talked to one, try to get an appointment with a hematologist or an endocrinologist who have experience treating porphyrias. They will be able to help you figure out what triggers attacks, how to minimize the symptoms, and perhaps help you come up with a more exact diagnosis if you don’t have one already (e.g. do you have AIP, HCP or VP type porphyria?).
Vlad/Igor, MT(ASCP)