Tara Cantley

Type of Porphyria

Acute Intermittent Porphyria (AIP)

I started having extremely bad stomach, lower back and leg pain around the age of eleven. This pain was so bad that it regularly left me writhing and crying on the floor. My mother saw my distress and took me to our local doctor, but he could not find any specific reason for the pain. The doctor discounted the severity of the pain attributing it to just normal growing pains. The doctor suggested the best treatment would be Tylenol. In my teens, I started having periods and from then on, my mother attributed my pain to my menstrual cycle and never took be back to the doctor.

As I got older, I failed almost every gym class I tried to participate in (running, basketball, baseball, etc.) because I would get extreme pain on my right side where my liver was. My alternative was to write essays on whatever activity we were doing at the time. I was able to be a majorette for one year and to participate in color guard for a while, but the attacks interfered with those activities, as well.At the time I did not know they were attacks.

The only time I got relief was later in life during my pregnancies. During the eighth month of my second pregnancy, I had some tests done. and they found my liver enzymes were elevated. I was preparing to have a liver biopsy done when I got a call from my aunt on my father’s side. She and I had not had a lot of contact over the years, but she had heard about my problems and called to give me some information. She told me we had a rare disease in our family and asked if I would do something for her. She asked me to get a small cup, pee into it and put the cup on a windowsill where it would get sunlight. Then she asked me to call her back and tell her what color the pee was.

I did what she asked and then I called her back and asked her why my pee was reddish purple. She started to cry and said “Oh, no. You have it, too.” I said, “What do you mean, I have it, too?”

“It’s a disease called porphyria that runs in our family.”

She had lived out of state for several years and had not seen me during my teenage years and had not been aware of the problems I had had.

I was really upset because no one had cared to bring it up. No one in our family talked about it. They treated it as a taboo subject. Later, I found out that I had many family members who had it. When my grandfather was alive, I would call him and try to talk to him about it, but he would insist that it was just something that was made up and it was not real.

I thought I was alone but as I got older, I found out so many of my relatives had porphyria. My two sons do not have it, but my daughter does.

Pretty much my whole life has been hospitalization and because of the porphyria, I have so many other problems. I have had a heart attack, I had to have my gallbladder removed became it became necrotic. The right side of my body is much weaker, sometimes I slur my words, I have hearing loss in both ears, and I have been sceptic four times. I am so tired I do not want any extreme life-saving measures taken if I get to that point. I have suffered enough, and I do not want to suffer anymore if I have the choice. I would not wish this disease on my worst enemy.