Lymphedema and Britta have been acquainted since she was in her early teens and noticed swelling in her left foot. It wasn’t until she was in her twenties, however, working as an actress in New York City, that she realized that LE might be a lifelong companion. It was there, on a hot day in the city, that she experienced the full onset of primary lymphedema in her lower limbs.
In the two decades since that time, Britta has lived a determined life. Instead of allowing LE to limit her challenges, she has resolved to challenge her limits. Living with her unwelcome companion, she has maintained a vigorous career in government and politics, skied Mount Tremblant, completed the 10k Chesapeake Bay Bridge Run, explored Alaska and climbed the Great Wall of China.
Empowering others who suffer from lymphedema is Britta’s passion. In 2014, the Lymphatic Education and Research Network, also known as LE&RN, chose Britta for its Outstanding Advocacy Award on behalf of the LE community.
About Getting Lymphedema
My brother, mother and I set out on the sizzling summer morning of August 9, 1998 for a jog across the Brooklyn Bridge. Mom had always wanted to do that. She was visiting from Maryland that weekend. I remember the date, because we were anxiously awaiting the arrival of my nephew who came into the world later that afternoon.
Despite the warm weather, we stopped in at our local gym for a quick sauna afterwards. Then it was back home for a hot shower before heading into the city to show Mom some of the sites.
We capped off our sun-soaked march around Manhattan by cooling off in a Greenwich Village movie theater to take in Saving Private Ryan. By the end of the movie my left knee was aching badly. When the lights came back on, I could see my leg was swollen from the knee down into a column shape – couldn’t make out my calf, couldn’t see my ankle.
The weather, jog, sauna, hot shower, walking around the city all day in the heat….it was the perfect storm that set in motion the onset of my primary lymphedema. Unbeknownst to me my lymphatic system was not formed right from birth, and my body was like a ticking time bomb waiting for a trigger like the extreme conditions of that day to set it off.
My name is Britta Vander Linden and I came down with primary lymphedema on that day 20 years ago when I was 23 years old. Since then, I’ve learned a thing or two about coping with this condition, which has required my attention every day. I started Lymphedema Diary on the 15th anniversary of the onset of my lymphedema. If even one tip or word of advice results in making life a little bit easier for someone else living with lymphedema, then the effort I have put into creating this blog will have been well worth it.
I encourage readers not to be shy. Please comment and share your experiences too. As I quickly learned after that fateful summer day in 1998, resources are too few for people like us. We must help each other by sharing our knowledge and experience on this blog, its companion Facebook and Twitter pages – and other forums and websites like it. Nobody – not doctors, not our friends, not our family (as much as they may try) – really understands what it is like to walk a mile in our swollen shoes. Until they find a cure, we are our own best hope.
Enjoy my Lymphedema Diary.
Obligatory disclaimer: Britta is not a medical professional or authority. The words she writes are from her own experiences and knowledge. The advise she provides does not come with a promise of results. Consult a physician or medical professional, before employing any strategies, advice or techniques depicted on this blog.
So what is lymphedema? I prefer to define lymphedema as the following:
Levity is a must, when living as a lymphie. (“Lymphie” is the abbreviation for someone who has lymphedema. It’s a lot easier to say and sounds kinda cute.)
For a more clinical definition of lymphedema, I borrow from the Lymphatic Education and Research Network, also known as LE&RN:
“Lymphedema is a chronic lymphatic disease that results in disfiguring swelling in one or more parts of the body. It can be hereditary (Primary Lymphedema) or it can occur after a surgical procedure, infection, radiation or other physical trauma (Secondary Lymphedema). In breast cancer, for example, it can appear in the arm on the same side as the cancer, after lymph nodes are removed from the armpit region for cancer staging. Primary Lymphedema often occurs in the lower extremities. Lymph is the protein-rich body fluid that accumulates when the lymphatic system for fluid transport is damaged.”
Want to know more? LE&RN has loads of information on their website about lymphedema and how to connect to resources in your area. I highly recommend checking them out and becoming a supporting member.