Jen Hendrey Lapan – My Research Legacy
A Boston sports fanatic, Jen can usually be found cooking excessively for game-day parties at home with her husband and two kids, or managing her Fantasy Football line-ups while commuting by subway to work at the Broad Institute of MIT and Harvard.
When I first found out there was something off about my heart, it was already too late to prevent any damage from happening. I had thought I was basically healthy. And then suddenly I wasn’t! And even after I wasn’t, the doctors really weren’t sure what was going on. Was I having seizures? (That wasn’t it.) Did I have a rare cancer? (Thankfully, I didn’t.) At one point, I was discharged without any particular follow-up plan and without any known cause of the multiple episodes I continued to experience most days.
I was physically and mentally exhausted and sick of being sick. But I kept trying to be a persistent advocate for myself. If I could pass one thing on from my experience, it’s not to be cowed or shy and to trust your gut and pipe up, even when you’re the little guy. After all, yours is the only life you have!
Once I was finally diagnosed, I was relieved that I was going to have open heart surgery. I felt sure that my symptoms would all go away and that I’d be healthy again. And that’s what happened. But a long time has passed, and in our current era of growing genomic awareness, I find myself wondering whether it was really just random accident that led to my defect, among some millions of cells busily dividing and replicating inside a tiny being’s much tinier little heart? Perhaps it wasn’t random. What if there’s a secret hidden in my genome, which predisposed me to the condition I didn’t even know had lurked undetected in my heart until I was twenty-four?
If researchers can combine the health histories and genomic data of individuals like me to gain a better understanding of the mechanisms of cardiovascular disease, it may or may not directly help me, but I am confident it will help others. That’s why My Research Legacy is so exciting from my perspective. I think it’s very cool that researchers and individuals from all walks of life can collaborate at such a large scale to push science and medicine forward.
If you want to join Jen in leaving a lasting legacy, join our community at https://myresearchlegacy.org/