Invisible Disease

The story of Jessica

At 16, I almost died due to hundreds of P.E.’s surrounding both my lungs & from a major DVT in my left leg. Three days after I turned 17 (3.5 weeks later), I was able to go home. I was later given the diagnosis of Antithrombin Deficiency Type 2: a genetic blood clotting condition that allows my blood to clot easier (makes it “thicker”) than normal. Any stranger looking at me would never guess that I have a rare disease- I look like a normal 24 year old going about my life; but get to know me & you’ll notice the medical bracelet I wear 24/7 stating I’m on blood thinners…for life! It took me a long to be okay & even grateful for this disease. I felt so alone for years…and I was. My family would try to help, but they couldn’t understand what I was going through. I eventually started helping out with a local Hemophilia Foundation at a camp they held. For the first time since my diagnosis, I met people like myself! For the first time, I could talk & have people understand what it was like to have a disease no one could see…but that was as much a part of me as my hair color. For the first time, I didn’t feel alone & that’s when the emotional healing finally began. Now, almost 8 years later, I sometimes still feel alone (even amongst the Rare Disease community) because it’s not a disease you can see…but it’s still part of me. However, now it no longer defines me.