Thrombotic Thrombocytopenic Purpura: A Patient’s Perspective

For a month I had been experiencing unusual symptoms; headaches, bruising, bleeding gums and constant fatigue.  But I knew something was really wrong when I noticed petichea all over my body. I decided to go to a walk-in clinic where I had to convince a doctor that I needed blood work because he was sure it was just eczema. After days of not hearing back from the clinic about the blood test results I called the lab directly to ask that they forward my results to my dermatologist, who I had an appointment with later that week.

They were surprised to see me when I arrived for my appointment. They showed me my lab results, which showed a platelet count of seven and advised that I head straight to the nearest emergency department.  Armed with my test results, I arrived at the ED but they too were unable to diagnose me and sent me home suggesting I schedule an appointment with a hematologist the following week. 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. That evening a team of doctors gave me my diagnosis – TTP.

I spent the next five hours battling for my life. I needed 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 but I remember hearing the apheresis nurse begging a doctor to try again, telling him I had no other chance and that I was dying. Thankfully he decided to give it another try and was successful. I don’t remember much more from that night. I quickly forgot the excruciating pain – all I remember is how lucky I felt to be alive. Not a day goes by now that I don’t feel thankful for my life and feel lucky that my diagnosis wasn’t too late.

TTP Diagnosis Saves Lives

Shedding light on a rare autoimmune blood disorder that is considered a true medical emergency


By Taryn Byrne

There was nothing that could be done; the diagnosis came too late and Gergana Sandeva was fighting for her life in the emergency department.  If just one of the three doctors she had seen before finally being diagnosed with TTP (Thrombotic Thrombocytopenic Purpura) had access to direct information about diagnosing TTP –such as patient order sets which are evidence-based checklists used by medical professionals to ensure that patients are diagnosed and get the appropriate treatment more quickly – her experience may have been different. She could have been diagnosed on her first visit to the walk-in clinic. She could have been started on treatment before her veins collapsed. She could have avoided becoming a near-fatal medical emergency.

The Answering TTP Foundation, together with and hematologists with TTP expertise from Canada, USA, England, and Australia, has developed a set of order sets as well as a discussion document to help speed the diagnosis of TTP. Please join the movement to help save lives, by adding these TTP order sets to your hospital’s working library.

Gergana is just one of the countless TTP patients who were not diagnosed until it was almost too late. Unfortunately many other TTP patients continue to suffer irreversible complications, such as kidney disease, stroke, heart attack – or even death – because they aren’t diagnosed soon enough.

TTP is a rare autoimmune blood disorder, with three out of one million people diagnosed each year and is considered a true medical emergency. TTP is caused by small blood clots made up of platelets forming throughout the body, restricting vital blood flow, placing organs such as the brain, heart and kidneys at risk for damage. Since platelets are being used up to form these numerous unnecessary blood clots, their availability to perform their normal function is also compromised, and life-threatening bleeding can occur.

If TTP is suspected it is crucial that a hematologist is contacted immediately and plasmapheresis treatment is begun without delay. This treatment can mean the difference between life and death for patients suffering a TTP crisis and offers them the best chance for survival.

The Answering TTP Foundation was formed in 2009 by a patient, for patients and families of those affected by TTP. Since that time, Answering TTP Foundation has incorporated and gained charitable status in Canada. Answering TTP Foundation is a Canadian charity run by volunteers both in Canada and internationally. The Foundation is committed to engaging and connecting the TTP community to further common goals while creating life-saving awareness and raising funds for research to find a cure.

The Foundation needs your help to improve the prognosis for TTP patients; and you can do this simply by adding the TTP order sets to your hospital’s working library.

Taryn Byrne is Charitable Programs Director at the Answering TTP Foundation. For more information on TTP