Since I have had frequent migraines before, I was not overly concerned when they started again. I added “doctor’s appointment” to my To Do list. The weekend I found what looked like little blood spots that continued to spread over my legs, arms and chest, I later learned were called petechiae, I knew something was wrong. On May 18th, 2010, a date permanently embedded in my brain, I found myself in a hospital emergency room. I was having chest pain and trouble breathing. A urine sample with a layer of red on top was sitting on the table next to me and a hematologist was explaining that I had a rare auto-immune disease called TTP. I tried to focus and comprehend what she was saying. The information should have been easy to process, this was just science something that comes easily to me. But all I had was 30 questions in my head and the hope that my dad had understood, because I certainly didn’t.
After that my life changed; I spent the next 2 ½ weeks at St. Micheal’s hospital trying to cope with the fact that I had a disease caused by an enzyme deficiency of ADAMTS13 that causes me to develop clots in my blood vessels. I was 30 years old, barely finished my graduate studies and having to worry about strokes and heart attacks. I naively tried to understand exactly what was happening to me. I armed myself with my laptop, determined to pull out all medical papers on the subject, and asked a billion questions to learn as much as possible about my condition. I dealt with the ever increasing side effects of the Prednisone and adapted to the Apheresis machine. I still could not understand why this happened to me. I received 183 units of blood products in total - I counted because I felt so indebted to those who had generously donated their blood.
By the end of my 3 month ordeal, I learned that I was a lucky patient. I was a relatively mild clinical case of TTP, with no permanent damage and I gained a new family at St. Micheal’s hospital. I have begun to feel comfortable getting back to my normal life and month by month I breathe a little easier knowing that I have not seen those little red spots again.
I have replaced the anxiety I felt with a desire to help newly diagnosed patients cope in whatever way I can. I therefore joined Answering TTP in order to provide emotional support to new patients and look forward to raising awareness and financial support for research in the hopes of promoting therapeutic advances.