Question: Why does acute intermittent porphyria (AIP) cause abdominal pain? Abdominal pain is the tell-tale sign of AIP, so much so that doctors sometimes mistakenly think surgery is required! Why does AIP cause abdominal pain?
Answer: your disease causes porphyrin precursors, notably porphobilinogen and amino-levulinic acid, to be secreted and accumulate to toxic levels causing damage to nerves. this can manifest as stomach pain. much of the details of this condition is still unclear.
Question: HELP!!! My sister has Acute Intermittent Porphyria. No doctors in my area know anything about it. PLEASE HELP? My sister got diagnosed with Acute Intermittent Porphyria about 2 days ago. I live in Pennsylvania and no doctors really know about this disease at this moment. She's been in ICU since last Wednesday and they might think it's too late for the medication. Pnuemonia took over her lungs and they aren't really improving. We are really scared right now because we don't know if it's too late to treat this rare disease. Are there any doctors or nurses or ANYONE who has come in contact with this disease? I read 1-5/100,000 people are effected by this every year. We have been trying to contact doctors from around the U.S. to help us but a lot of doctors have not even heard about it. PLEASE HELP MY FAMILY-- give us a foundation, a doctor who knows about this, anyone.. who can help my sister fighting for her life as we speak.
Answer: You have to read this...it gives you a phone number you can call
http://www.porphyriafoundation.com/
I really hope your sister can get some help.
Question: What is acute intermittent porphyria? I have been suspected bout this diagnosis... Currently taking screening.. Well Dr never tell me what is all about??? Plus does it cure if getting it?? any treatment for that???
Answer: Hi Mercury, You will get all info about this disease on the following website:
http://en.wikipedia.org/wiki/Acute_inter…
You can also get more info from: http://www.porphyriafoundation.com/about…
Your doctor should definitely explain it to you if you ask him politely to. If you want to know more about it please read the above sites. I sincerely hope this helps.
Question: How was porphyria discovered or identified. mainly acute intermittent porphyria? please help, I can't find anything on the internet, maybe somebody can help
Answer: Hi! I have AIP and my mother did as well (the most severe case documented on record) - until it took her life in 1989. Diagnosis is EXTREMELY difficult for many complicated reasons- THAT, they won't be able to cut and paste from wikipedia! IF you are lucky, it will show up in a urine test (but usually won't unless you are in the midst of an "attack" OR your porphyria is "active" as it is usually latent or dormant between "attacks" if/until it worsens) if not they can do a stool test. In BOTH cases, it is unlikely they will show negative unless you are in the midst of an attack- AND YOU need to educate yourself on the proper handling/storage of the samples as they have to be sent to the MAYO clinic and if handled improperly will be invalid. The other way to diagnose is if you are hospitalized during an attack and respond to heme therapy. That's the way it goes unfortunately. :( good luck
uuuh oops- i read question wrong lol :P
Question: how could a liver transplant benefit people with acute intermittent porphyria?
Answer: Since it's a genetic disease, a transplanted liver will replace a defective liver where porphyrins are produced and accumulated.
