Martha Prock

Type of Porphyria

Acute Intermittent Porphyria (AIP)

My story By Martha Prock

We did not necessarily want children that young, but I was afraid I might not ever be successful. I soon had a hideous episode of pain and general illness. As I recovered I became pregnant with our daughter. It was a difficult pregnancy, and she was delivered 6 to 8 weeks early. I had returned to finish my degree in English, when a specialist team of hemotologists and rheumotoligits told me I could not become pregnant again, and to stop the pill. My very competent GYN was not so sure, thus I found myself four-months pregnant unexpectibly. Those were different days, and the specialists encouraged a medical abortion. My gynecologist and I discussed it, and believed we could do it. Our second daughter was my first normal pregnancy and delivery, but a few hours after delivery I began to bleed internally. There was late-night surgery, and blood transfusions, but because those days the A- blood available in our regional hospital in Springfield, MO was limited,  my doctor chose to limit it to six units and allow me a long recovery. Aids in blood from the coasts was a great fear, and I did later receive a letter when my youngest was three or four telling me to be tested and to inform all my sex partners. I told him, and I started a 20 year career of teaching journalism and secondary and college English lit. My final major episode came about age 50, again with a change in hormones, and I was quarentined in Springfield Mercy Hospital with running sores and pain in my gut running into my legs so horrible I was on a morphine drip for 2 weeks. Horrible test, too awful to remember were done, and word Porphyria was mentioned. I was sent to a teaching hospital in St. Louis. Barnes had one hemotologist who had treated a AIP patient, and he ran a range of tests. However, I was not familiar with teaching hospital procedure and was amazed and somewhat frightened when his junior staff member entered the final visit to engage in verbal battle. The primary thought it was not AIP, because he had only seen it in drug addicts and alcoholics. The junior both talked, stalked, and drove him down. I continued to be hospitalized with more minor episodes as I passed through menopause, but I received no drugs. Sometimes I was hospitalized with a simple sugar drip that seemed to ease those. I retired early at age 60 to read and ride horses. All three of our children had achieved full scholarships and graduated from college by then. I still have many pain problems, and have been lucky to be able to rely on doctor-monitored pain meds with no physical or psychological problems. It is a hard, painful road, and I hope better research and care will help others. In my search for an answer in 2000, I contacted the Apf when it was located in Galveston, TX. Amazingly, the doctor I encountered, Dr. Andersen, was a distant cousin who had been at a family reunion somewhere in Oklahoma when he was a teen, and I was seven or eight. I explained we spelled my great-grandmother's name as Anderson, but he laughed, and told me we all carried genetic markers that made Porphyria very likely. I hope Apf continues its advancement of new treatments. You can message me as Marsha Prock on Facebook, or email me at mp01@hotmail.com with any questions. Thanks for a chance to tell my story.

I had pneumonia my senior year of high school  missed a full quarter of school which gave me time to read.  My grades were never better. I entered nursing school but found I simply did not have the energy although I loved the biology and chemistry classes. I changed to a liberal art college, met my husband, and was married at age 19. When I was placed on birth control pills, my health improved, and I had no more episodes until I was pulled from the pill at age 27 because no one knew for certain what their long-lasting ramifications were. I had delivered an early, but healthy baby boy at age 21 after 3 early spontaneous abortions.