I’ve never been one to enjoy science. I was never fascinated by the way the human body works or intrigued by the brain’s functions. I did not participate in science fairs or enjoy dissecting animals. I am where I am today due to hard work, discipline, and many life experiences. My so-called knowledge didn’t come from a traditional classroom setting and a college degree. Most of what I know was from hands-on lessons and an ever-lasting glimmer of hope.
When I was diagnosed with immune thrombocytopenia (ITP) in 2019, I wished I had paid more attention in that biology class growing up. I didn’t even know what a platelet was for me even to understand platelet dysfunction. I had no knowledge about this disease or what it meant for me.
Read more about experimental therapies for ITP
When you look up ITP, you will find it is a fancy way of saying your blood doesn’t clot. When I asked why this was happening, I was met with an uncomfortable shrug, signaling, “We don’t know.” When I asked if this would be a continuous problem, they didn’t seem to know that either. At the time, I thought they just meant they didn’t understand why it was happening to me, but I soon discovered it’s a pretty rare disease, and they weren’t really sure why it happens to anyone.
Uncertainty is not a position I like to be in. I like to know why things happen. Was I doing something to cause this? Could I do something to prevent this? Was my body lacking an essential element? There wasn’t any scientifically proven cause or cure, which just boggled my mind. It scared me a little bit, too, to be honest. How do all the doctors in the world not know how to fix this?
So, as any person would do, I took to the internet. I wanted answers to my own body. I steer this ship; how do I know what direction it’s going in if I don’t know what makes it go? If I get into a car accident, how does my body stop me from bleeding out and dying? Is there a way to monitor this before it gets to a dangerous point? Nobody knows.
I read case study after case study. I was knee-deep in medical journal excerpts, trying to understand clinical trials and their outcomes. Followed a laundry list of treatment options wondering how does a person even choose? The more I searched, the more I found. Google was great for confirming that this was, in fact, a rare blood disease with an unknown cause or cure. It wasn’t until I took to social media that I found the most beneficial knowledge ever.
Some of the best advice I’ve ever been given hasn’t come from a textbook or case study but from another soul sharing a similar experience. I started to “meet” people over different social media platforms, all with varying degrees of ITP. The more information I shared, the more connections I made. I slowly started to build my own knowledge base around this insanely weird blood disease.
With each person I talked to, I learned something new. There was no case the same, not a single one. Everyone I met that was diagnosed with ITP, whether it was chronic or they were in remission, their stories were different. I learned that what treatment worked for some didn’t work for others. I found that how a UK hematologist treated their patients was different from how an American hematologist treated their patients. What some patients thought were normal levels, other patients thought they were critical levels.
I was introduced to potential treatment options that my hematologist hadn’t discussed with me before. I was suddenly full of knowledge about ITP, and it all came from people just like me.
When learning about ITP, real knowledge is in the heart of all my fellow ITP warriors. It was with them that I discovered where my power was, and that helped me learn how to navigate with my care team better and become an advocate for myself. In my desperate search for knowledge and understanding of this new rare disease I was navigating, I was met with so much more. We have strength in numbers, and that is powerful in itself. Knowledge is power, and we are stronger together.