Gergana Sandeva

Patient, Answering TTP Foundation (Volunteer)

I was diagnosed with TTP six years ago, after a Christmas vacation with my family in Europe. I was excited about the new year ahead – starting medical school and moving in with my boyfriend of 10 years.  I had been experiencing some unusual symptoms for a month: headaches; bruising; bleeding gums; and, extreme fatigue. I knew something was really wrong when I noticed the petichea all over my body. I went to a walk-in clinic and it took an hour to convince the doctor that I needed blood work. He was sure it was just eczema and prescribed me a basic topical cream. He relented and gave me the paperwork and I went directly to a local lab to gave blood and urine samples.  After not getting the test results from the clinic, I called the lab directly and asked that they forward my results to my dermatologist, who I had an appointment with later that week. 

When I arrived for my appointment, they were surprised to see me. They showed me my lab results that showed a platelet count of 7 and advised that I head straight to the nearest ER! Armed with my test results, I arrived at the ER, where I waited for 4 hours. They were unable to diagnose me and sent me home but asked me to call the following week to schedule an appointment with a hematologist. I knew that things were getting worse and time was not on my side. The next morning, I went to the ER of another local hospital. They repeated my blood work, asked some questions and then I waited for ten hours, until that evening, when a team of doctors approached me and gave me my diagnosis – TTP (Thrombotic Thrombocytopenic Purpra).

I spent the next five hours battling for my life. I had to receive life-saving plasmapheresis treatment, however due to my collapsed veins, the doctors could not insert my central line. They had given up on me! I remember hearing the apheresis nurse begging one of the doctors to try again, telling him I had no other chance and that I was dying. Thankfully, one of the interns decided to give it another try and he was successful. I don’t remember much more from that night. I quickly forgot the excruciating pain; all I remember is thinking how lucky I was to be given another chance at life. I spent the next month and a half in the hospital, and every day of the following six years living with TTP, grateful for my life.

I know that there are others who weren’t as lucky as me. I started reading numerous research articles about the condition, desperately trying to find something encouraging. Unfortunately, I soon realized how little was accomplished in researching and raising awareness for this disease. I was extremely disappointed, but not discouraged by this fact. Instead I became fully committed to changing it.  I was fortunate to meet other patients who gave me the support I needed and made my battle with TTP much easier. With your support, we can give hope to patients like myself and maybe one day we will find the answer to TTP.

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