Most people have never heard of Lymphedema, or if they have, they don’t understand what it really is. For a long time, neither did I.
Lymphedema is actually an accumulation of lymphatic fluid in the soft tissue that causes swelling. Most often in the arms and/or legs, but occasionally in other parts of the body
There are two types of Lymphedema: Primary and Secondary. Primary Lymphedema is caused by abnormal development of the lymph system. Usually, symptoms occur at birth, but can possibly appear later in life. Secondary Lymphedema is caused by damage to the lymph system; by infection, injury, cancer, removal of lymph nodes, radiation to the affected area, or scar tissue from radiation therapy or surgery.
I was born with Primary Lymphedema in my right leg. The last fifteen years have been a difficult journey for my family and I, all the while trying to figure out how to make the best of the situation.
When I was very young, my right foot and leg were constantly swollen. My parents and I sought out various educated opinions. It was then, that I received a diagnosis of congenital Lymphedema and proceeded with a variety of treatments to try and reduce the swelling. After talking to various doctors, I explored prescribed lymphatic message therapy, or LMT, with licensed lymphatic specialists, which resulted in measureable reduction of swelling.
For a while, I kept my foot and leg wrapped in Ace bandages with a special lymphatic pattern of wrapping to reduce the swelling. I also continued with daily at-home LMT and Ace bandage wrapping until the swelling was manageable enough to have a special stocking fitted. I then started, and continued, to have 6 month check-ups and measurements for custom made stockings. Soon after, I discovered a relax-fitting compression stocking to wear at night instead of the Ace-bandages.
It was months afterward when I noticed that my right calf muscle was not as developed as my left. The Lymphedema specialist at Mayo Clinic then recommended a stocking with less compression around the calf but continued to have a strong compression on the foot. I found that, after incredible searching, these stockings don’t exist! Due to the fact that we obviously couldn’t find any, my mom has been altering two different stockings to fit my special needs for over four years now.
As I've grown, we've tried a variety of brands and styles to achieve the most comfort and benefits. There is such a variety of choices, and yet, at the same time there is not. Because there are different kinds of stockings, we’ve had to experiment to find the right ones. Its almost seems that whenever we find a good kind to get, the brand decides to discontinue it, which makes us have to start the process of finding a good one, all over again.
When I was nine, the excessive pounding from my kick dance, without supportive shoes caused Edema in the bones of my foot. Meaning, liquid was starting to form inside the bones, causing severe pain. In order to fix that, I stopped dancing for a year. I also had to use crutched sfor over four months to alleviate the stress on my foot.
Now, I want you to understand that, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant fluid not only causes tissue channels to increase in size and number, but also reduces oxygen availbility, interferes with wound healing, and provides a source for infection.
Two years ago, I got a very small scrape on my knee, but because my leg was so prone to infection, it became infected overnight, my temperature rose up to 105 degrees, and my leg quickly began to purple as the infection spread. After being taken to the emergency room, I was rushed to St. Mary’s hospital, where I stayed three nights while being given extensive anti-biotics.
A few months later I purchased supportive jazz sneakers, which allowed me to dance again. At the same time I was fitted for orthopedic supports, or I just prefer to call them “arches”; one smaller pair for my dance shoes and one regular sized pair for my every-day shoes.
I have discovered that low-stress, regular exercise helps my leg feel better. But too much extensive exercise hurts it. I continue to dance, swim, bike, golf, play tennis, and do other sports as my body allows. I also continue to monitor proper foot-wear, orthopedic supports, and well maintained continual compression on my foot and leg.
One thing that’s very hard about having Lymphedema is that I personally don’t know anyone else who has it. This means I can’t easily relate to, talk to, ask questions to, or figure out problems, with others who also suffer from Lymphedema.
And even though I don’t know anyone else who has Lymphedema, there are multiple online support groups. My mom is a member of a few of those groups. The National Lymphedema Network is a resource network to find help and doctors. If a person has Lymphedema, and they have not been properly treated, it can get so intense that they become immobile and disabled. Most of the time, for those people, these online groups are the only communication and help that they get. The Twin Cities Lymphedema SupportGroup meets once a month.
Women who have breast cancer, get their lymph nodes removed, thus giving them a far greater chance at getting Lymphedema. Because so many of these women do get Lymphedema, and more-and-more lymphatic patients are being found, I hope that someday soon, a cure will be created.
But, as of now, there is no cure. Although, I know, that with proper maintenance I can alleviate future affects of Lymphedema
Over the years I have gotten used to having Lymphedema, wearing stockings, and going through all the extra precautions that come with Lymphedema. When I was younger, kids would always ask me “Why do you have to wear that?” or “What’s that for?” referencing to my stocking. I used to say nothing because I got so embarrassed by the fact that I had to wear it. I even got teased and bullied because “it looked funny”. As I got older, very recently actually, I realized it’s not something to be embarrassed or ashamed about. Just something extra about myself that’s different than most people. Its one thing that makes me: me.