In honor of Lymphedema Awareness Month, BrightLife Direct is donating part of this month’s sales to the Lymphatic Education and Research Network (LE&RN). This organization utilizes education and research to fight lymphedema and lymphatic disease. We are teaming up with lymphedema blogger, Britta Vander Linden to support the cause. Find out more about LE&RN, Britta’s inspiring story, and some of the causes and symptoms of lymphedema below.
Lymphatic Education and Research Network (LE&RN)
Wendy Chaite founded LE&RN when she became frustrated with the lack of resources available for her daughter, who was born with systemic lymphatic disease. This organization is fighting to find a cure for lymphedema, while assisting in the education and research of this condition along the way. Kathy Bates is currently the spokesperson for LE&RN, and recently appeared on The Doctors to talk about her experience with lymphedema. This summer, Kathy is celebrating her birthday by hosting a 5k Run/Walk to Fight Lymphedema and Lymphatic Diseases in Santa Monica, CA on June 28th. There are tons of events you can get involved with to make a difference. If you live on the east coast, check out the 6th Annual Walk on September 19th on the Brooklyn Bridge!
Every day, LE&RN is helping to find the answers that hundreds of millions of people worldwide who are affected by lymphedema are looking for. Check out their website for the latest research, information and events. You can even ask the experts to find the answer you need. LE&RN is dedicated to answering the questions that most doctors can’t. To this day, there is not much information on lymphedema, and LE&RN is actively working to change this.
Check out Britta (second from left), her husband, Luke (far left), fellow honorees and members of LE&RN’s staff at a LE&RN event last year. She was honored for her remarkable work on her blog, Lymphedema Diary, and also for her years in support of the LE&RN organization.
Britta was diagnosed with primary lymphedema in both of her legs when she was 23 years old. When she first found out she had lymphedema, she was panicked and worried. She had questions about her condition that doctors couldn’t figure out the answers to. Instead it was her dad who came to the rescue to find the answers she was seeking. “He is my Lymphedema Hero” she says. More often than not, when someone is diagnosed with lymphedema, they feel like they are left in the dark. Britta defines lymphedema as “a medical condition that many medical professionals cannot diagnose, do not understand, and are incapable of advising patients about, leaving patients to seek guidance from strangers on blogs.” She thinks that anyone with lymphedema can relate to this statement. LE&RN is working to change this by promoting the education of lymphedema to teach people about the symptoms early on, and about how to maintain a healthy lifestyle. The same year Brita was diagnosed was the year that LE&RN was founded. Since then, Britta has relied on LE&RN for medical information, resources and hope for a cure. She feels that “LE&RN has done more to put lymphedema on the medical radar and to directly sponsor lymphatic research than any other organization that she is aware.” To this day, LE&RN has done an incredible job of educating and advocating lymphedema.
Although Britta sarcastically describes her condition as mild, it significantly affects her daily life. “I cannot stand up for more than a few minutes without the help of compression stockings. I begin experiencing pain, swelling, heaviness and sometimes feelings of pins and needles in my legs. Even when I have the stockings on, I can’t stand for long periods of time. Lymphedema factors into every aspect of my life –what I wear, how I sleep, when I take a shower, what kind of car I drive, what exercise I do…So no matter the severity level, the effect of lymphedema on a person’s life, self-esteem and pocket book never feels mild.”
LE&RN defines lymphedema as “an abnormal collection of high-protein fluid just beneath the skin. This swelling, or edema, occurs most commonly in the arm or leg, but it also may occur in other parts of the body including the breast or trunk, head and neck, or genitals.” The lymphatic system helps to maintain your immune system. It can develop in any area of your body where the lymph nodes are not getting enough lymph, which is the fluid in the tissues that builds up due to abnormal flow. Lymphedema usually begins at the farthest part of your limb such as your hand/wrist or in your foot/ankle. If your limbs feel heavy, swelling occurs, your skin feels tight, or if you experience decreased mobility and flexibility in your foot, ankle, wrist or hand, you should contact your doctor immediately. These symptoms may be the start of lymphedema. If this has happened to you before, do not ignore it! Just because the problem may take a backseat for a while, it doesn’t mean that the issue is solved. There is not enough research at this point in time for doctors to immediately point to lymphedema as the cause. A lot of the time, it takes multiple doctors to figure out the problem. LE&RN is working to teach people about lymphedema to catch it early on.
PRIMARY LYMPHEDEMA – People who have primary lymphedema like Britta are born with an abnormal lymphatic system. Although primary lymphedema is rare, many people are still affected by it. A lot of the time it is hereditary. Primary lymphedema can occur when the lymph nodes form abnormally. This is called congenital lymphedema, or Milroy’s disease. Lymphedema praecox, also known as Meige’s disease, is the most common form of primary lymphedema. It is usually noticed in the lower extremities around puberty, especially in girls, or during pregnancy. Another form of primary lymphedema that occurs around the age of 35 or later is called lymphedema tarda (late-onset lymphedema), which appears in the lower extremities in men and women.
SECONDARY LYMPHEDEMA – When you damage your lymphatic system from trauma, surgery, radiation or infection, secondary lymphedema can occur. This condition is often caused by cancer treatment. Radiation can damage your lymph nodes, which can decrease lymphatic flow. When you are undergoing this type of treatment, make sure to keep an eye out for any changes in skin color, redness or blistering. Secondary lymphedema occurs when the flow of lymph is blocked or altered. When your lymph nodes are removed due to melanoma, colon, prostate/testicular, bladder or breast cancer, your risk of secondary lymphedema significantly increases. Scar tissue can also be a factor.
Treatment & Prevention
While there is no cure for lymphedema, there are a couple of things you can do to reduce discomfort and swelling. Try elevating your limb and keeping it clean and dry to decrease swelling and irritation. Maintaining a healthy weight, eating foods that are high in protein and avoiding salty foods are also important. When you have lymphedema, it is extremely important to stay as active as possible to keep the lymph fluids moving. Do not sit or stand for long periods of time without moving around. If you work at a desk, make sure you wear compression socks! If you have lymphedema in the lower extremities, it is important to wear compression stockings to increase circulation, decrease swelling and discomfort.
After surgery for breast or prostate cancer, avoid injections into the area. You should also try to keep your arm or leg elevated, and do not apply heat. It is also important not to do any heavy lifting with the arm and to avoid constricting the area with tight clothing. Make sure you keep the area protected from injuries and infection. Wear a compression arm sleeve to increase circulation and decrease swelling. LympheDIVAs is an amazing company that makes fashionable compression arm sleeves. The company was founded after two breast cancer survivors decided to change the game and make compression sleeves fun, comfortable and elegant for people who will wear them every day for the rest of their lives. To them, wearing beige, rough textured, bandage-like arm sleeves was a bore. Now, they have tons of cute patterns and colors to choose from! LympheDIVAs also works with LE&RN to promote education and awareness about lymphedema.
Together, We Can Make A Difference
The Lymphatic Education and Research Network has made great strides in lymphedema awareness, education and research. With your help, we can make a difference. Stay up to date on our blog this month for more information on lymphedema. Comment or share this post and tell us what you are doing for Lymphedema Awareness Month! Special thanks to Britta for her inspiring story and support! Check out her blog below:
Lymphatic Education & Research Network
Lymphedema facts, treatments and guidelines
Kathy Bates – Life With Lymphedema
Occupational Therapy Case Study – Primary Lymphedema
Great Lymphedema Blogs and Communities
Gloves & Gauntlets
Custom Compression Garments
How We Became Breast Cancer Thrivers
All Lymphedema Products