Why I've Become an Advocate for Primary Lymphedema

Growing up with primary lymphedema didn’t mean much to me because I didn’t know I had it until I was 18 years old. I had never even heard of it. So when I was at work one day and my coworkers were freaking out asking what I had done to my leg that it was so swollen, I was immediately confused. I thought to myself, “My leg? What? My leg is fine.” Until I looked down at my leg. Holy Spice Girls! What did I do?? I immediately pulled up my pant leg to look and boy, was it swollen. It was foreign to me! I had no idea what was wrong. I showed my parents when I got home and it was decided that I needed to see someone about this.

Here’s where I fast forward because this part is full of numerous doctors, tests and blood work trying to figure out what had happened. Which, of course, no one knew who, what or how. And I kept getting the same response from everyone in the medical field (nurses, doctors, technicians, etc), “You’re too young to have any problems.” Thanks man, you’re only the 357th person to mention that.

Moving on…finally after seeing a vascular specialist, I was diagnosed with primary lymphedema. Meaning I was born with it unlike those who get it because of cancer, removal of nodes, accidents damaging the nodes, etc. I started going to get wraps and compression stockings which is ridiculously expensive! Insurance only covers so much of the stockings and so many “therapy wrap” sessions before they’re like, “You’re all better now.” No, I’m not. I’m pretty sure it’s never going away. I’m no doctor, but the guy who plays my doctor and has a Ph.D. says it’s sticking around.

Fast forward again. Present day. I’m now two months shy of my 35th birthday and thanks to my mother, who has always been heavily active in my medical life, came across a support group for women in the area and we meet the first Wednesday of every month. At first I hated going but now I want to be more involved! Our main agenda is to share our experiences, treatments we’ve had, doctors that know how to treat it and to figure out ways to reach out to our local politicians to inform them more about the Lymphedema Treatment Act. This Act is important my Lymphies – this is a federal bill that aims to improve insurance coverage for the medically necessary, such as doctor prescribed compression supplies needed to maintain a healthy lifestyle with lymphedema.

National Lymphedema Day is March 6. In my home town of Buffalo, NY, we are celebrating by having The Peace Bridge and Niagara Falls lit up in blue (that’s the color of lymphedema awareness) as well as a brief segment on the radio and telly. How exciting for us! We’re really hoping that we can use this as a tool to spread the word about lymphedema, because let’s face it – I went 18 years of my life not even knowing the lymphatic system existed! This system is crucial to our health! I’m proof.

Since my lymph system doesn’t work properly, I tend to get cellulitis in my legs frequently. If any of you reading this have had cellulitis you’ll know how excruciatingly painful it is. I’ve wound up in the hospital too many times because of it, missed consecutive work days, holidays, etc. This system cleans out toxins from the body – cancer cells, viruses, whatever dirt is laying dormant in your body. Because of this, you had better make sure that your filtration system is working properly. This “dirt” needs to be pushed out because if not these viruses and cancer cells will begin to use the lymph system as a water slide and spread all over the body wreaking havoc. I love my body and all the unique and “fun” stuff that has accompanied it – I’m not obsessed with my health because I love food, especially the sugary stuff – but I do also like being healthy. I enjoy the days I feel good enough to go out of my house. I like going to work. I love being active with my dogs. I want to spend quality time with my family, especially my niece and nephew. So, yeah, I think that this is a system that should be studied more, treated as though it’s so delicate that the thinnest hair in the universe could destroy it if touched the wrong way. There should be more lymphatic specialists in the world.

Let’s get it out there to everyone that this is something doctors should be more aware of and focused on. Let’s become educated, seek numerous opinions and advice from multiple sources and promote the amazing lymphatic system! Let’s gather as a community, work together and give a huge shout out to the lymphatic system!

Happy National Lymphedema Day to all my fellow Lymphies!

Getty Image by bignoze