Member Story- Tonya Carpenter-Love Type of Porphyria Acute Intermittent Porphyria (AIP)

  • May 22, 2020

Member Story- Tonya Carpenter-Love
Type of Porphyria

Acute Intermittent Porphyria (AIP)

In 1984 I was hit by a car, and after more than 22 surgeries, nothing has ever been the same. In 1986, I started having problems with ringing in my ears, extreme hearing fluctuation and visual distortions. The symptoms led to a diagnosis of Meniere’s disease in my right ear in 1986. In 1990 I was diagnosed with Autoimmune Disease, which supposedly had caused the loss of hearing in my left ear. At that time my doctor tried, without success, to treat me with chemotherapy. There was a break in the treatment long enough for me to give birth to my son. I stayed miserably sick during the four long years between chemo and pregnancy. I was finally taken off the chemo treatment after it had eaten my bladder lining.

My appendix was removed unnecessarily while visiting an ER for extreme stomach pain. Actually, I have been to more ER’s with abdominal pain than I can count, but other than the time my appendix was removed, there was never any clue as to what might be causing the pain. Over the years I’ve heard such explanations as “It’s just a bad case of gas” to “There is nothing wrong with you!” There were times when I would pray and beg for death, times when I would be so mentally impaired that life had no other meaning cruel harsh hopelessness, times when I could not get out of bed, and times of loneliness when no one could understand what I was going through.

I was finally diagnosed with porphyria two years ago, after being trapped for six hours in a public restroom with severe abdominal pain. I cried out for help to my latest primary care physician, and something clicked for her like it had for no other doctor in my life. After completing two 24-hour urine tests and not knowing what my physician was looking for, I was called into the office and given the diagnosis of Acute Intermittent Porphyria.

My name is Tonya; I was born in Tennessee and raised in Alabama. I am 42 years old and have no known family medical history, as I was adopted at age four. Before I was diagnosed with AIP, I had never heard the word porphyria. However, I have always known that I was “different.” Even before my porphyria diagnosis, I had many other medical diagnoses on which to blame my strange and many symptoms.

Although the symptoms never really matched the diagnosis, I had the answers, or so I thought. In these two short years, I’ve not only learned how to pronounce the word, but I have also learned much about what makes my attacks become active. I still continue to have days and nights where my world is upside down, my pain is unbearable, I can’t complete a simple task and loneliness is my constant companion. However, I have gone through the phase of “What is Porphyria?” and the phase of “What does it mean for me?” I am now entering the phase of, “What can I do to help others?” If you would like to contact me in regards to porphyria you may do so by writing

Tonya Carpenter-Love