Last year I participated in my first ITP Awareness event. I simply wanted to share my story, raise awareness and rally together some donations for research. HUGE Thank you to the many people that donated, I was able to raise $1,500 for the Platelet Disorder Association.
September is ITP Awareness month and I'm trying to raise money AND bring awareness to help with the search of finding a cure!
I was diagnosed with Immune Thrombocytopenia (ITP) in November 2019. It's a rare blood disorder where your immune system attacks your platelets, making it nearly impossible for your blood to clot (in simple terms). A normal range for platelets is between 150,000 - 400,000. At the time of my diagnosis I had been admitted to the hospital with a platelet level of 5,000. I was actually heading to the airport for vacation and decided to get some routine blood work on my way out of town. It was a good thing I did because had I gotten on that flight, I probably wouldn't have survived. I spent a week in the hospital doing testing, treatments (IVIG) and feeling a lot of unknowns. I didn't get to go on vacation BUT they were kind enough to discharge me on my 35th birthday and that was something worth celebrating!
I then went on a heavy dose of steroids for several months there after. I eventually got off the steroids, my platelets went up and I was sure this was a one time thing. I read online that some people NEVER experience it again. I knew that was going to be me! I did blood work once a month and continued on with life.
Unfortunately, this past August I relapsed. I had a bloody nose I couldn't stop and took a trip to the ER. This time my platelets were even lower at 2,000 - it was a good thing I went in because they considered me to be in critical condition! I stayed in the hospital for a few days, received 2 platelet transfusions, more steroids and then was sent home to take it easy.
I'm still building my platelets up and getting back into that safe zone above 150,000. Reality is - this probably isn't going away.. So I've taken a new approach at life - I'm clearly a vampire. I mean, I've been close to dying twice and didn't and I REALLY need blood to survive! Just like a vampire! LOL I'm trying to find humor in this crazy time. Life is weird!!
This entire experience has been something I could never imagine. An invisible disease? I can't do anything about it? There's no cure? I don't know when it will happen? It's life threatening? Nobody knows why? OK - It's fine... I'm fine... everything is fine!
I've taken the last few weeks to REALLY learn about this disease. I feel like a sponge reaching for any and all information that is out there. Since ITP is so rare, so many people know nothing about it. I want to change that. I have an amazing support system and I want my friends, family, co-workers, connections, everyone, to know about ITP! I want people to be aware, to feel comfortable asking questions, remember, knowledge is power! ITP may be invisible - but I'm not!
Facts: ITP affects 3 in every 100,000 people. It's more common in children than adults. It affects more adult women than men. It is not contagious or hereditary. You cannot test yourself, the only way to check your platelets is through a CBC blood panel.
I have a small goal of $1,000 - Please help me in bringing awareness and finding a cure!
PS) I am participating in a VIRTUAL walk/run to help raise ITP awareness. It's virtual so you can do it from ANYWHERE in the world. You can walk/run/cycle whatever your heart desires! Let me know if you're interested and I'll get you a race bib so you can show your support! Let's Pump It Up for Platelets!
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