I am an almost 2-year-old with primary lymphedema. I was born with a slight swelling of my hand which progressed through out my first year while my parents gathered a team to help get me a diagnosis. It’s been hard as congenital lymphedema is rare and there are not a lot of providers that know about it or even know where to send you for help.
My parents call it my strong arm. Being a rambunctious two-year-old wearing compression for a year close to 20 hours a day has had its challenges, but I still manage to do all the things my friends do, I ride bikes and climb playgrounds and love to play ball. I just hope to bring more awareness about primary lymphedema so maybe some other kids see they aren’t alone.
There’s always the typical representation of secondary lymphedema or grownups with primary, I think the littles that are born with it get forgotten about so I’m here to show the world what life with lymphedema looks like through the lens of a little and say watch me do it all.