My name is Alexa, and I have primary lymphedema in my right leg.
In 2011, I created this blog as a way to cope with my diagnosis; today, it’s evolved into a means to educate, connect, and support lymphedema patients and advocates across the globe. It’s also a means of spreading awareness of lymphedema to those who maybe aren’t so aware, with the hope that one day no one will go without treatment or care simply due to lack of awareness.
My lymphedema story
I’ve had symptoms of lymphedema since I was an infant, and although my parents took me to a number of doctors and specialists, no one knew why my leg was swollen or what to do about it. This lack of information and awareness turned into almost fifteen years of my living with untreated, undiagnosed lymphedema.
Before my diagnosis (and even for a few years after), I used to think my lymphedema was secondary: I had corrective casts on my legs when I was an infant, so I assumed one had been applied too tightly, thus damaging the lymphatic system in my right leg.
Today, my lymphedema therapist believes my lymphedema may actually be primary. Because I went so long without a diagnosis, however, we just don’t know for sure how I developed my lymphedema or whether it’s primary or secondary.
The ambiguity and lack of answers are, unfortunately, a frustrating and common reality for many of us living with lymphedema. But I believe we can change that together: we are our own best advocates, after all.
A quick note: Although I’m pretty knowledgeable about the feelings that come along with having this disease, I’m by no means an expert on lymphedema—I am not a doctor. If you are seeking medical advice, please consult your doctor or lymphedema therapist pronto!