I do not think I ever grasped that a single number could change your life. If you asked me what my number was, I might have thought you were referring to my phone number, my address, my bra size or even the number of people I have been with. Of course, numbers signify many things, including money. I understood that you needed numbers to designate costs and prices. I acknowledged that numbers were an integral part of learning and counting. I recognized that numbers were important for telling time and one's age. However, it was only until 18 months ago that I realized one number could cost you your life, and that it could be my own.
It was after a normal night out with friends at University of Maryland, where I noticed bruises all over my body. I quickly realized something was not right and went to an internist's office to get my blood drawn. The doctor called me and seemed panicked about my platelet count. Little did I know her panic would be mine for the rest of my life.
I only had 15,000 platelets that day. I could not comprehend why that number mattered so much, until she informed me that the normal platelet range was 150,000-400,000. Suddenly, a number became a potential matter of life and death. She told me to see an oncologist or hematologist immediately.
Within a week, I was diagnosed with an unknown autoimmune blood disorder called Immune Thrombocytopenia (ITP). With ITP, your body attacks its own platelets which are the cells that clot the blood. Too few platelets can lead to excessive bruising and internal bleeding.
I immediately started to imagine how my life would change and what life was like for those who had ITP. I saw beautiful children in the hospital with needles and IVs in their arms. I saw teenagers receiving infusions and undergoing chemotherapy, covered in rashes and bruises. I saw those prepping for a splenectomy, with no guarantee it would raise the platelet count. I saw adults whose mouths were filled with blood blisters, nosebleeds and unbearable fatigue. I saw the tears of hope and fear in their eyes and their families, as they desperately wanted answers. But, there were too few, if any.
ITP can strike as quickly as it can depart. ITP affects almost 10 times as many people as hemophilia, yet almost no one knows anything about it. It is not genetic and does not discriminate against its victims, as ITP attacks those from all demographics.
The frustration of dealing with ITP and battling an unknown and unpredictable disease has been the catalyst for me to advocate and spread awareness to better the ITP community. The Platelet Disorder Support Association, the main organization that supports ITP, has enabled me to connect with those who have it, where I have created strong bonds with patients all across the country. While ITP does not and will not define who I am, it has been an unforgettable journey and continues to be a huge part of my life.
Last year, I decided to organize my first 5k walk/run for ITP in my hometown of Livingston, NJ to benefit the Platelet Disorder Support Association. PDSA supports ITP patients with education, advocacy, support and research.
After a very successful event, raising over $45,000, I decided to plan my second 5k walk/run this June with another fighter, Linda McGuirl, to find a cure and help rid this world of ITP. Linda and I were both diagnosed at 21, and although we are decades apart in age, we both take strong pride in raising awareness and taking control of ITP. Riding the roller coaster in the world of ITP is so much better when you're not riding alone.
Don't let your compassion stop at wishing to see others free from suffering. Do something.
To pre-register, or make a donation or for more information, visit this link.
Registration/Check-in will begin at 12:00pm and the event will begin at 12:30pm at the Livingston Oval in Livingston, NJ on Sunday, June 8th.