March 6th is Awareness Day for people with lymphedema, a day to honor and celebrate all who are living and coping with the condition.
It’s also a day to show the world that this is no longer a rare condition, and that we need proper treatment, coverage, and support.
In 1999, I made a discovery that made my heart drop. I felt a lump in one of my breasts. I was fortunate that it was a small cancer in situ, and I only needed a lumpectomy.
In 1999, I made a discovery that made my heart drop. I felt a lump in one of my breasts. I was fortunate that it was a small cancer in situ, and I only needed a lumpectomy.
However, upon a second surgery to evaluate my lymph nodes, I developed a condition called Lymphedema. Because of the surgery, radiation, and an infection, my affected arm began to get swollen and puffy.
It was then that I discovered the name of a condition that will be with me for the rest of my life. I was diagnosed with lymphedema:
Lymph-edema (lim-fa-DEE-ma) a chronic swelling caused by a buildup of lymph fluid that occurs when the lymphatic system is either faulty or damaged. There is no cure for lymphedema, but it can be effectively treated.
During this new journey into understanding lymphedema, I have found I’m not alone. I learned that about 30%-40% of people who have experienced breast cancer develop it at some point. I learned that mine was termed secondary because of my cancer treatment.
Lymph-edema (lim-fa-DEE-ma) a chronic swelling caused by a buildup of lymph fluid that occurs when the lymphatic system is either faulty or damaged. There is no cure for lymphedema, but it can be effectively treated.
During this new journey into understanding lymphedema, I have found I’m not alone. I learned that about 30%-40% of people who have experienced breast cancer develop it at some point. I learned that mine was termed secondary because of my cancer treatment.
I learned that there is also primary lymphedema which is genetic that can show up at a child’s birth or later in life. The swelling can affect other parts of the body including the legs and face.
Over time, lymphedema, if not treated correctly, can often result in several complications including infections, disfigurement, pain, and disability. But while lymphedema cannot be cured, it can be very effectively managed, substantially reducing risk. Managing it is accomplished mainly by manual lymph massage, that must be done daily and compression therapy.
Over time, lymphedema, if not treated correctly, can often result in several complications including infections, disfigurement, pain, and disability. But while lymphedema cannot be cured, it can be very effectively managed, substantially reducing risk. Managing it is accomplished mainly by manual lymph massage, that must be done daily and compression therapy.
For me, that means that I must wear a compression sleeve everyday so that the lymph is held under control. Sometimes I must wear a compression glove, especially if I’m in an airplane or traveling at higher elevations, to prevent sudden swelling.
Compression is to lymphedema what medication is to many other diseases making it indispensable! Prescribed Compression garments must be replaced every six months, which, of course are expensive. Many health insurance providers do not consider the garments necessary; Medicare does not cover them.
It is estimated that 3-5 million Americans suffer from lymphedema. Due to a lack of awareness, information, and education, even within the medical community, lymphedema is often misdiagnosed or undiagnosed. Delays in diagnosis or treatment can result in rapid and unchecked progression of the disease.
Compression is to lymphedema what medication is to many other diseases making it indispensable! Prescribed Compression garments must be replaced every six months, which, of course are expensive. Many health insurance providers do not consider the garments necessary; Medicare does not cover them.
Yet, they are vital to every lymphedema patient to maintain a healthy and active life. Currently, Senators Maria Cantwell and Chuck Grassley are the lead sponsors of the Lymphedema Treatment Act that seeks to provide financial help to those who must wear compression garments. Many have worked for 10+ years to get this through congress; lawmakers in all 50 states support the LTA.
To find out more about the Lymphedema Treatment Act go to lymphedematreatmentact.org
To find out more about the Lymphedema Treatment Act go to lymphedematreatmentact.org
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