Today is Father’s Day 2019 in the United States, so it is the perfect time to heighten men’s health and the fact that men get LE too. Many of you know that my father and grandfather both had primary lymphedema. Since Dad struggled for over 20 years to get a diagnosis, I want to share the story of a man living today in 2019 over 5,000 miles away in Belgium.
Our guest blogger also struggled to get treatment for decades and today he is determined and committed to boss his body into compliance with physical fitness and strength training despite the repeated flare ups. My Dad used to have this saying, “You gotta pay the cost to be the boss.” When I read Jeroen’s guest blog post, I knew he was the perfect Father’s Day read for the site. Right now he is working hard to raise awareness for LE on social media.
Thank you, Jeroen, for your bravery and courage. This is his story in his own words.
My name is Jeroen Auwerx, 30 years old, from Belgium.
I’ve been born with primary LE in my lower left leg. It was immediately visible at birth, but unfortunately no-one could tell my parents what it was exactly that I had. It even got to a point where my parents got accused of child abuse, before the diagnosis lymphedema was given.
During the first few years of my life, I wore some sort of compression. I don’t really remember this, and I don’t have any pictures of it. As I got older, I didn’t wear them anymore. My left leg always was somewhat bigger, but not really something I worried about. Also, since nobody really knew anything about LE, there wasn’t much follow up, which led to me not wearing compression at all or even caring about my leg.
When I got to the age of 16-17, I started taking an interest in fitness. Mostly just to try to lose my stubborn belly. Over the years, this spiraled out of control and I stumbled into competitive bodybuilding. My leg was always somewhat under control, apart from the occasional outbreak. So I never really took any special care of it. I did notice that I was fatigued without any explanation sometimes. My leg hurt from time to time, but I never linked it to this “mysterious condition which nobody else had.”
Up until I was 18, I’ve had 4 cases of cellulitis. These bursts of infection put me in the hospital every time, for at least 2 weeks, my leg swollen beyond recognition, red, a stabbing sensation in the lymph nodes and being unable to move. Again, nobody knew what to do, so I got strapped to an elevated board, got an IV with a basic salt solution and that’s basically it.
Fast forward to 26 years old. In 2015, I started really getting into a somewhat okay shape, and my trainer asked me if I was interested in doing competition bodybuilding. Being curious about how far I could get, I agreed and started getting ready for my first show. This all went well, not that I got any wins out of it. I just beat the guy I used to be and that was all I was after. Over the span of 2015-2016, I ended up doing 6 contests. I didn’t care about my leg, it was under control, I was never told about how bad it could get. I wasn’t aware there were triggers or things you’re not supposed to do with LE, nothing.
The day after my last contest, I noticed my leg was getting bigger, feeling stiff. Not only that, it felt like higher up things weren’t looking and feeling how they were supposed to either. Even my genital area felt wrong. I went to a urologist, thinking it was something wrong in that department. What I was told by that man will never be forgotten.
In my file he saw I had LE, his next words were..
Just Google it. This is a condition so rare nobody takes an interest in it. People can’t make money off of this area.
There I stood, knowing nothing more, feeling abandoned and getting more and more swelling. It got to the point where my entire body, except my right arm and chest area, is affected by LE.
So I did what I was told and started searching for help. After two months of searching, I came across an article about a Belgian surgeon who was specialized in LE. “Finally” I thought. Unfortunately, I learned that I had the primary case of LE, which was not his specialty. One and a half years went by with consultations and tests, but nothing came out of it. He just didn’t know how to treat me. So back to Google and trying to find actual help.
This time I did find help with someone who actually cares about the patients.
Focus and Determination
During this time, I lost my job and broke up with my girlfriend of over 9 years. Found a new job but wasn’t able to keep it due to being sick with LE, so had to find a new job yet again.
Throughout all this, I never stopped training, because that’s where I can put my emotions and frustrations into. Seeing myself go from contest shape to water balloon really got to me and gave me a very hard time. All the work I put into it was lost in a matter of days.
In the summer of 2018, I managed to get back to a decent shape, which held up for about 3 months. My lymph specialist saw very good progress, the future was looking good until November 2018. Without warning signs, I woke up one day with a face looking like I was stung by a bee and had an allergic reaction, legs so swollen, my left hand thick and hard to move. My specialist had no clue how or why.
Trying to repeat to process of last time, now 7 months later, I can finally say it’s back under control.
There were so many times where I wanted to give up, but the gym has given me a tool to try and stay boss over my own body.
If I didn’t train, I don’t know where I’d be now because I’m pretty sure that what I do helps me keep control, despite of what doctors advice about heavy lifting.
Today I’m in compression all day. My face looks like my own again after 3 years of not recognizing myself, my left arm is under control and my genital area is back to almost normal.
Now I’m in several Facebook groups sharing my story and trying to help out where I can. Sharing my experiences with therapy. These groups are a major help for me. The support is amazing, especially if you consider that up until 3 years ago, I thought I was alone dealing with LE.