I’m Jelka Lepever, a 22-year-old woman living her dream without any fear. I was only 6 years old when I was diagnosed with immune thrombocytopenia (ITP); after running into a table, I was left with a huge bruise on my armpit.
My parents took me to see my pediatrician when they noticed the bruise on my armpit was getting bigger and causing me pain. It started to get very swollen, and it seemed like it wasn’t going to get any better. My pediatrician immediately sent me to see some doctors at the hospital, and they took several tests.
The tests showed that I had a very low blood platelet count — only 6,000 cells per microliter (cells/mcL). This led them to diagnose me with ITP, a bleeding disorder in which the immune system destroys platelets (cells that are necessary for normal blood clotting).
I was so young, and the doctors believed there was a chance I might grow out of the condition with age. Until that happened though, I had to be extra careful about everything I did.
I wasn’t allowed to play outside if there was any risk I’d bumped into something or fall on the ground. I wasn’t allowed to participate in gym class in school. For years, I sat on the sidelines for several hours a week. Any activity where I might bump into something or fall too hard was off limits.
The hospital became my second home. I was there a few times a week to check my blood platelet count. If it was too low, (the doctors usually waited until I got below 20,000 cells/mcL), they would treat it right away. This happened almost every single visit for the first few years.
The older I got, the more stable my blood platelet counts got. Every Friday after school, I would go to the hospital to get treated with an injection of intravenous immunoglobulin (IVIg). With the IVIg treatment, my blood platelet count would stay stable for a week.
Eventually, the time in between treatments became longer, and my count was much higher (I was above the average of 150,000 cells/mcL). By age 16, my doctors determined I was cured. They thought I grew out of it as I got older.
At 17, I started to travel for work; I was flying all over the world. At one point, I was in the process of getting a work visa for South Korea, and I relapsed to a very low blood platelet count. I was diagnosed with ITP, once again.
The doctors told me that the condition was now chronic, and I’d have to learn to live with it. None of this came as a shock to me though, because I’d been living with it since I was 6 years old.
Ever since then, my blood platelet count has been stable and not so low that I need treatment. I float between 40,000 and 70, 000 cells/mcL currently.
I don’t want to live the way ITP wants me to live. I want to live the way I want to live. I found a way I could travel around the world for extended periods without being afraid of what might happen to me. I contact my doctor whenever I need him, and he helps me right away. Also, I found excellent traveling insurance.
I got myself more into sports because I love them! I know my limits and what I can do without putting myself in any danger. Just know your body, and you’ll get through it all. At the end of this trip, enjoying life is what it’s all about! Appreciate the things you can do and don’t focus on the things you can’t do.
I just want you to know that it’s still possible to follow your dreams. It might take a little more preparation, but it’s worth it.
Jelka Lepever is a 22-year-old woman based in Belgium. At the age of 6, she was diagnosed with ITP and has been living with the condition ever since. A full-time model, she’s travelled all around the world since age 17 to pursue her career. She shares her story about ITP and veganism (she’s been a vegan for three years) whenever she can.