Pump It Up NJ! ~ for a world free of ITP
Sunday, June 8, 2014
The Livingston Oval ~ 30 Robert H Harp Drive ~ Livingston, NJ
12:00pm - 3:00pm
I never truly grasped that a single number could change your life. Sure I realized that if you received a surplus of money such as winning the lottery or getting a raise at a job, you would probably never forget it. Or even on the opposing end, if you lost a lot of money to an investment, it would probably stick with you for a while. But I never thought a number would be a reoccurring determinant in my life.
You see, 17 months ago, I was diagnosed with Immune Thrombocytopenia (ITP), at just 21 years old. To be perfectly honest, I had never heard of it. Almost no one has. I guess that was the first stage I wasn’t alone in.
After a blood draw at my internist’s office, she called me panicking about my platelet count. Little did I know her panic, would be mine for the rest of my life.
She called to say that I had only 15 platelets that day. I didn’t get why that number mattered so much. Until, I got the courage to ask what could happen at a low platelet count. Her response was that I could bleed to death. That’s when the fear set in.
I soon had to leave the University of Maryland during my final semester in college after consulting many hematologists and oncologists and began to learn as much as I could about ITP. ITP is rare autoimmune blood disorder where your body destroys its own platelets, which are the cells that clot the blood. The normal range of platelets is from 150-400. Having too few platelets can cause internal bleeding and a brain hemorrhage.
Treatment options to date include steroids, infusions, chemotherapy, orphan drugs, and splenectomy. So how do you even know what treatment to try? What will raise them? I learned the answer the hard way. There is no right answer. You try different treatments to see what works by getting very frequent blood draws, often once a week.
The uncertainty of this disorder is truly the name of the game. After much frustration and anger dealing with an unknown and rare blood disorder, I decided I wanted to make a difference. Last year, I organized my first 5K for ITP in my hometown of Livingston, NJ. With great support from the community, friends, family and the ITP community, I was able to raise over $45,000, which benefited the Platelet Disorder Support Association. PDSA supports ITP patients with education, advocacy, support and finding research.
This year I am planning my second ITP 5K walk/run on June 8th from 12-3PM at the Livingston Oval with another ITP Patient, Linda McGuirl. She was diagnosed at 21 as well and has been living with it for over 30 years. Although both of our battles have not been easy, connecting with someone who knows what you are going through makes it the ride that much better.
Please come out to support this unbelievable and unknown cause. This can be your shot to give back. Do something remarkable. Better yourself. Each and everyone one of you can be a better person. Today’s a chance to begin.