The Platelet Patrol
I was diagnosed with ITP in September of 2013. ITP, also known as idiopathic immune thrombocytopenia, is a blood autoimmune disorder in which my immune system marks platelets as foreign and destroys them, thus leaving the person at risk of spontaneous bruising, internal bleeding or brain hemorrhaging. Throughout that prior summer, I had been bruising uncontrollably all over my legs for no apparent reason. When I finally decided to see my doctor in the fall, he had no clue what could be causing it but made the ultimate decision to run blood work. I received that infamous 3:30 AM phone call alerting me to get to an ER immediately as my counts were at 6,000 (Normal is 150,000 – 400,000) and I could be brain hemorrhaging at that moment.
Since then, it has been a roller coaster. I now see a hematologist regularly, averaging every week to two weeks or longer when my counts are good. My levels went up while being on prednisone and stabilized for a few months, however the side effects were very difficult to deal with. Over the past 2 years, my counts have crashed several times and I have undergone IVIG (intravenous immunoglobin) infusions to help stabilize them. This past December, I was lucky enough to see the top ITP specialist in the world in New York City to explore further options. Since January, however, my levels have been stable amazingly all on their own. This has truly been a blessing for me these past few months.
Even though I worry on a daily basis about new symptoms arising or even how my energy levels are overall, I still feel the need to bring awareness to the ITP issue. Many people still have never heard of ITP and many forms of treatment are still considered experimental, so we need to do all we can to spread awareness and continue research to find a cure. Awareness is key when fighting this battle.
This year, I am organizing a "virtual walk" and am asking people wherever they are to take time out on a single day in the month of June (whether it be 5 minutes or even an hour) and walk wherever they to honor and show support for those with ITP. The Platelet Disorder Support Association (PDSA) has been such an important part of my journey with ITP. They have supplied endless amounts of information and knowledge and are the sole association funding research to help so many people like myself with ITP. As they are strictly a non-profit organization, they rely on the gracious contributions of people around the country.
Please help me in my fundraising efforts and join me on my journey to fight ITP! Thank you for all your continued support!