From Patient Worthy’s friends at the Platelet Disorder Support Association comes a post about a patient’s experience with Immune Thrombocytopenic Purpura (ITP) and a walk to raise awareness about the condition. The first annual local Pump It Up for Platelets event is in Williamsburg, Virginia — Patient Worthy’s hometown! This event coincides with ITP Awareness month, which occurs every September.
From the Platelet Disorder Support Association’s Facebook Post:
“I have had ITP for 18 years now, but my journey started when I was just 10 years old. I went for my yearly well check in before school started and was found to have very low platelets. They sent me straight over to the children’s hospital with little explanation as to what was going on. Very tearful and nervous I went through countless more tests and confirmed that I did in fact have ITP. Which explained all the bruises I had from softball and gymnastics.
“They assured us that this is usually something that children outgrow … lucky for me we later found out that I am with the small percentage of patients that carry ITP diagnosis from childhood to adulthood. I had my first treatment at the children’s hospital that same day with the IV treatment WinRho. I had to come back frequently for blood tests and treatments all through middle and high school. I was limited to the activities I could be a part of, which was hard in school, being different and feeling left out. Sports, gym class, backpacks, textbooks, pools and amusement parks were all part of things I was very limited to do as my doctor did not want me to have any contact activities.
“After close monitoring they soon realized I was not easily treated/controlled, and this would in fact not be something I grow out of. My platelets have always ranged between 0 and 30,000. Over the years I have tried every medical treatment available, injections, IVs and oral medication; and unfortunately, have failed them all except one.
“I am now on the oral medication Doptelet and this has worked for me for the past 3 years. Even on treatment our goal is to stay above 20,000 platelets. It has been a rollercoaster of finding a treatment that would work for me. I am now 28 years old and continue this lifelong journey with the support of PDSA and the friends I have made.”
Come join Hannah in her walk for the Platelet Disorder Support Association on Saturday, Sept 21 at Freedom Park in Williamsburg, Virginia. For more information, please contact Tracy Trueblood at [email protected].
