San Francisco, California

Hi! I am a 26 year-old female living with primary lymphedema in my lower left extremity. I wanted to take this opportunity to share my personal story with this wonderful community.

One day, a couple of months before my 11th birthday, I noticed my foot had been feeling “funny,” so I flung off my sock to take a look. To my surprise, not only had my foot swelled significantly, but also about halfway up my calf. Alarmed, I immediately showed my mom, who assumed I had sprained my ankle playing basketball (I had fallen during a game a couple of days prior). The next day, we went to the doctor—and the series of tests began. Physical exams, x-rays, MRIs, ultra sounds, blood work—but everything came back normal.

Eventually, a doctor gave my swollen foot a name—lymphedema. He said it’s pretty rare, happens more in girls than boys, usually affects one limb, and happens around the onset of puberty. As for prognosis or treatment? The response was: “It might get better, or it might get worse, but there’s not much you can do about it,” and sent us on our way.

So for the next 12 years, I just lived with my “fat foot”, as myself, friends, and family lovingly called it. Sometimes it was difficult dealing with the stares and questions, not being able to wear the shoes I wanted to, feeling self-conscious every time my foot or leg was exposed, feeling intermittent discomfort and pain, but I was managing okay. My foot seemed to be staying approximately the same size, and I was able to participate in all the activities I wanted to be involved in.

Then, during the summer I was 23, my foot began to bother me a bit more. I noticed the skin near my toes getting tighter and rougher, the swelling seemed to be getting a bit worse, and I felt pain more frequently. I started to think, “There must be a better answer out there than: It might get better, or it might get worse, but there’s not much you can do about it.”

This is where my journey began and I plan on continuing my expedition and hopefully finding others to join me in this experience. With some research and help from my dad, I found a doctor who knew where to refer me! I found this wonderful, magical place—a lymphedema clinic run by two occupational therapists who changed my life. They taught me all about lymphedema—what we know about what causes it, treatment options, management techniques, and risks. I lost over a cup of fluid from my foot and leg after treatment, and now I have a whole set of tools I utilize for self-care. I am constantly reading everything I can get my hands on about lymphedema—surgical procedures, genetic research, therapeutic techniques, exercises, dietary modifications, homeopathic remedies—you name it!

I am doing quite well now, and I am inspired and impassioned to raise awareness about this disease and form relationships with others who have been affected. Thank you for reading my story ☺