Acute Intermittent Porphyria (AIP)
My name Brigitta Owen. My story begins with my grandmother who died at the age of 27 just 10 days after giving birth to my father. She died of colic after eating too many cherries. I know now that she had an acute porphyria but then, they just didn't know better!
When I came into teenage years, I could not go out in the sun without a hat or some protection. I always ended up being sick and suffering from what I thought was "sunstroke." I did not start having real attacks until I got pregnant the first time at the age of 19. I got pregnant and miscarried 7 times and each time my symptoms got worse. Terrible pain, changes in my personality, was put down to being afraid of another miscarriage. I always ended up in a psych ward where they gave me medicine that made me worse.
When I fainted, I got smacked and was told to pull myself together. I was black and blue, but they really thought I was putting it on! When I wasn't sent to the psych ward, they opened me up first and never found anything and then sent me to psych hospital.
My 8th pregnancy lasted 28 weeks. I gave birth by cesarean section to my first daughter, Michelle. She did well for 2 weeks but got an infection she couldn't fight being so small. Sadly, we lost her at just 3 weeks old. My symptoms were severe and took a long time to subside. We decided to try one more time if it did not work we would stop. I got pregnant very quickly and, of course, I ended up in hospital. My instinct told me something was wrong, but even my husband believed it was all in my head.
I was born in Switzerland but lived in the UK (Wales) since getting married. I was desperate and phoned my mum and asked if I could come home as nobody believed me. My husband drove me to London where I was carried on to the plane. The pilot came to ask what was wrong, I just said I was 9 weeks pregnant and wanted to go home. Thank God he didn't send me away!!!
When I got home, the first thing my mum did is to take me to hospital. I only agreed if she took me home again. She had to promise as I thought they would not believe me anyway! They took a blood and urine sample. My mum took me home. Early in the morning, the hospital phoned and said for her to bring me back to hospital as they knew what I had. They left my urine standing and it turned purple! Finally, I had a diagnosis after 7 long years to hell and back!! I was suffering from Acute porphyria. The doctor said if I waited another week I would not be writing to you now!!
I stayed in Switzerland in hospital 3 month before I was well enough to go home to Wales. I was hospitalized nearly all my pregnancy. I gave birth to my miracle Heidi, who was born healthy all be it 6 weeks early. Straight after birth I was sterilized. I wanted my husband to have the operation, which he refused. Even though it meant me having a risky operation and anesthetic.
My Porphyria was very active now. I had flare-ups with every hormone change .I haven't been drinking a lot of alcohol before and now I don't drink at all. I am very careful with medicine.
I was admitted to hospital a lot. They were terrible experiences. They didn't believe I was in a lot of pain. I was injected with water just to see if I was lying. They put me in a side ward and took the bell away. I know I am really difficult when I am in a flare-up. My husband couldn't cope anymore. He was getting so angry every time he could see I was unwell again. Slamming doors, even leaving. This just made me worse.
I ended up in hospital again so upset that he left me. All the nurse said that if she had a wife like me she would have left a long time ago. I felt so alone and guilty.
I understood my husband as well. It’s not easy to have a wife who is always ill. The whole situation was hell for both of us. We decided to go our separate ways. I went back home to Switzerland.
It’s the best thing I ever did. My doctor is fantastic. He changed my life. First of all he believed me. I got a port. He registered me as a chronic pain patient. This enables me to get pain relief. I don't get stressed anymore. I am well enough to work full time. It’s not all rosy if I end up in hospital, I still get doctors who won't believe my pain. As soon as I sense disbelief, it catapults me back to those years of hell, and I feel I have to fight for my life.
My daughter Heidi, who is 30 years old, went through genetic testing and is positive. Until now she is well. I hope and pray it stays that way!!
Since being able to share story’s and have the privilege to meet other porphyria sufferers from all around the globe and finding out about the American porphyria foundation, it gives me hope for the future. Not just for me but also my daughter and grandchildren.
I'd like to thank you for listening to my story even though it was a struggle I’m not sorry!! It made me to the person I am today with empathy and compassion which we need a lot more of in this day and age.