I Have Acute Intermittent Porphyria

A Acute Intermittent Porphyria anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Acute Intermittent Porphyria. You're not alone. 65 People

    My Wonderful Symptoms

    -Foggy thinking loss of attention  -Shaky hands -Hot flashes, sweat like crazy -Blurry vision -Pain severe (body mostly lower limbs and back) also abdominal pain that puts me in the fetal position.  -Fatigue Severe -Stiffness in feet and legs -Trouble peeing varies from...
    Kaiireland Kaiireland
    31-35, F
    3 Responses Feb 11, 2013

    Need Help And Advise No One Understands What Im Dealing With

    I am a mom of 3 small children so stress is my middle name!!!! Thank god for my loving suportive husband i have six other family members with AIP my mom/grandfather/cousin and 2 great uncles and a great aunt. My mom and grandfather are deceiced and the rest of them arent the...
    VAmomof3 VAmomof3
    26-30, F
    4 Responses Aug 29, 2012

    Turn the page. Tomorrow I will start an

    exercise regimen. With so much sugar in the aip diet I've put on some weight. I'd love to lose 25lbs by end of June! Who's in? Matthew
    Kairos77 Kairos77
    1 Response Apr 28, 2014

    Aip Is Like A Black Hole-feel So Alone

    So I can't stand on the precipice of this 'now' and risk to reach & share my personal story of having been diagnosed with acute intermittent porphyria. It has been almost ten years since to try and stay alive, my world literally had to go dark. I have crossover types. I sought...
    saychele saychele
    41-45, F
    3 Responses Aug 4, 2012

    Hi all. I have not received a diagnosis

    but I was hoping someone could offer some advice as I have a feeling I may have AIP. My grandmother has it and my mum had a borderline reading when tested years ago, and after countless abdominal surgeries, she has continued to show symptoms. My brother has also showed some...
    MeganJade92 MeganJade92
    22-25, F
    1 Response Mar 17, 2014

    My Mom Has Was Diagnosed With Aip Over 35 Years Ago

    Hello... my name is Julia . My mother Joanne is 74 years old and was diagnosed with AIP over 30 years ago . her father also . I hear many stories from my mom about how my grandfather had excruciating head pains , she had to watch while she was growing up .but what I watched my...
    osheajulia osheajulia
    1 Response Jun 11, 2011

    My Daughter

                                 I don't have this disease, as far as I know anyway. My daughter, who is 16, does however. She was just diagnosed on Friday, March 11th but has been suffering from a list of symptoms since she was about 13. She has had...
    shanner1228 shanner1228
    31-35, F
    9 Responses Mar 14, 2011

    Aip & Nerve Pain

    Hi guys, Recently I've had some worrying symptoms that my doctors haven't really explained. I was wondering if anyone else with porphyria has experienced the same? I woke up from a dead sleep hollering and grasping my left quadriceps; it felt like a wasp bite (stinging, burning...
    Kairos77 Kairos77
    4 Responses Oct 15, 2012

    Diagnosed In 2006 With Acute Intermittent Porphyria

    At the age of 22, I was a healthy, fun loving, young lady. I was on birth control pills to help even out my mentrual cycle as it was very irregular.After about 6 months, my health deteriorated out of nowhere.I was having abdominal pain, severe emotional distress to the point of...
    stephgallegos stephgallegos
    26-30, F
    3 Responses Mar 6, 2012

    So Alone

    As I lay here wondering how my life went from perfect ( for me) to this! How did I go from an able bodied mom and wife? I worked, cleaned and had dinner on the table when my husband got home. I was there for my kids. I have to say I have no doubt in my mind if I was a good mom or...
    Kaiireland Kaiireland
    31-35, F
    2 Responses Feb 10, 2013

    Help With Acute Intermittent Porphyria

    There is help with most of your health issues. I am a member of the American Porphyria Foundation. Please check their website. They can help with tests, and have information for your Doctors. I come from 3 generations that was tested positive for this disease and my daughter...
    dee450 dee450
    1 Response Sep 8, 2013


    I was told that i could possible have AIP, my symptoms are right upper abdominal pain (it feels like someones burning my insides) vomiting, constipation, low grade fever, redish-brown urin, troubles urinating, my shoulders feel heavy and weak during an attack and also pain...
    mmcdonald2010 mmcdonald2010
    23 Responses Nov 10, 2010

    Aip & Meds

    I was looking at the amount of meds I take each day, specifically opiates, ssri's, laxatives, and anxiety ones. I'm a health and fitness professional, and sometimes it seems like I need barrels of pills to get through the day. So, I thought I'd start a thread to see what our...
    Kairos77 Kairos77
    3 Responses Aug 6, 2012

    Aip Patients!!!

    please join my group in facebook, it is private group and once being an AIP patient myself I have a lot to share and would to hear from you all. I'm trying to rise awarness in Canada so we can get the rights as AIP patient and rise awreness about this rare disease. Any concerns...
    zaffay zaffay
    2 Responses Feb 12, 2012

    Uk Aip Sufferer :

    I am so surprised that there is a group for porphyria but more specifically AIP I was diagnosed in 2002 (inherited it from my mother) and intitially didn't suffer too much. I would have one ot rwo states of crisis / porphyria attacks a year but in recent years my condition has...
    cityangel cityangel
    9 Responses May 16, 2011

    Could This Be Porphyria?

    Hello, I am a 42 y/o male and over the past few years I have been in and out of the hospital several times due to unexplained severe abdominal pain. I was diagnosed with Ulcerative Colitis in my 20's and I am currently taking azathioprine and Lialda to manage that. I am also on...
    folate folate
    41-45, M
    3 Responses Jul 27, 2012

    My Invisible Hell… AIP?

    Hi my name is Kassity. I have been getting more sick as the years go by. I am now 32 and for the last 3 years I have aquired; perephrial neuropathy, severe chronic pain in my legs, back and right upper quadrant of my abdominal ( my liver ), I have tingling in my arms and legs, oh...
    Kaiireland Kaiireland
    31-35, F
    3 Responses Feb 8, 2013
More Stories