Type of Porphyria:
Acute Intermittent Porphyria (AIP)
My name is Ruth Delores Bruno, and I live in Rolling Meadows, IL. I am married and the mother of two young sons.
In 1973, while driving home from work, I started to mentally prepare for dinner. It was 5:00 PM and traffic was slow. My two sons were at softball practice and my husband had a tennis match after work, so I had plenty of time to stop at the bakery. As I parked my car in front of the bakery, I started to feel strange. My legs and hands were beginning to tingle and then a familiar pain started to throb in my right side. I turned and hurried to my car. Then all my symptoms returned; pain in the right side, numbness, nausea, projectile vomiting, heart palpitations, confusion, panic, and, of course, fear and embarrassment.
I began to vomit uncontrollably and my pain intensified. I tried to walk into my house but fell and dragged myself into my kitchen to the phone. I called my Doctor. He sounded exasperated, because he thought my symptoms were mental, but nonetheless, he sent an ambulance to admit me to the hospital.
The doctor in the ER thought I had symptoms of a rare disorder and decided to do a WATSON-SCHWARTZ test on my dark wine-colored urine. By the time my husband and my family doctor arrived, the test was positive. My doctor apologized, "I am sorry, Ruth. It appears that you have not been imagining your pain."
"Sorry," I thought, "nine years of tests too numerous to remember and all the money spent on incorrect treatment, and he is sorry." I wanted to scream and cry, but instead I got dressed and politely said, "Thank you".
I was subsequently sent to a teaching hospital in Sayre, PA. After a week of tests, x-rays, and psychological exams, I was given the diagnosis of AIP. While I waited for my husband to come for me, I bought a newspaper and tried to concentrate on the national news rather than my own news. The national news was depressing too, so I turned to the Help Wanted section. An ad jumped out at me. New York State University was offering a new nursing program for adults. It was fate, because that class was taught one mile from my front door. The classes were the same hours as my children's, as well as the same holidays, etc. I had prayed for guidance, and here it was. I took the entrance exam, passed and was accepted into the program. It was the best thing I ever did for my family and me.
The following two years were filled with hard work. I learned to forgive human mistakes and to respect good doctors and nurses. I also learned to sincerely listen to what patients communicated to me in words and actions. I learned to speak in layman's terms when explaining treatments and procedures, and I have developed a very strong shoulder when someone needs it.
Porphyria has helped me grow in so many ways. It also has brought some wonderful people into my life. Fortunately, my sons and my sister tested negative for porphyria, but I still live with attacks. As a little girl growing up in a small southern town, I never dreamed I was going to face a rare disease and most of all, I never dreamed that I would become a nurse to cope with it all.