L.E. is a serious disease that you would likely never have heard of. Yet, in the United States alone, there are more than an estimated 10 million people who suffer from it. That represents more people than those who have muscular dystrophy (MD), MS, AIDS, Parkinson's disease and ALS - combined!
There are two different types of L.E. - the primary type, which is where a child is born with parts of their lymphatic system missing. Then there is the secondary type, which occurs as a result of injury to or removal of the lymph nodes. The secondary type being a common and profound side-effect of cancer treatment, where the lymph nodes in the immediate area of the cancer are removed in order to stop the cancer from spreading, as in my case. The secondary acquired type can tend to differ slightly in terms of being more delicate and painful.
L.E. does not discriminate in who can fall victim to the disease - young or old, male or female, regardless of a person's body type or healthy lifestyle choices - I was a young model and athlete with a life-long dedication to health and fitness when my cancer treatment resulted in development of the disease.
L.E - or Lymphoedema (sometimes spelt as lymphedema), in its unabbreviated form - is a disease of the lymphatic system which causes, pain, swelling and very high risk of potentially fatal infection to those that suffer from it.
The lymphatic system is one of the largest bodily systems and a crucial part of the immune system. It forms a chain of channels and nodes that carry a clear fluid through the body called lymphatic fluid. This fluid contains types of white blood cells and proteins and is responsible for the removal of bacteria. Also, a key component of the lymph system is bone marrow as it produces cells that support the body's immune system.
Given this information, you can imagine then, the effect on a person who has part of their lymph system removed or missing.
Managing the illness is exhausting. Daily sessions on a special pump, along with bandage garments and monitoring to ensure that activity isn't aggravating the swelling, is a lot to fit in, especially if, as in my case, you also have additional health problems resulting from cancer treatment. The affected area is consistently painful and tender and this worsens with any increase in swelling. A very frustrating combination for someone like myself, who has a lifelong love of sports and wishes to continue to be as athletic as possible under the circumstances of the effects of my cancer treatment. The larger the area affected, the more problematic the associated health issues become and the risk of infection becomes more difficult to manage. Unusually in my case, I was extremely unlucky and have L.E. in both legs and my abdomen.
L.E. can make those that suffer from it very unwell physically. But also, there is a deep psychological aspect to the disease. Like anyone who has undergone a serious life-changing injury or illness, I had to undergo intense rehabilitation therapy to learn to live with the changes to my body. Personally, I have never adapted to the loss of my perfectly-toned physique under the cruelest of circumstances. Although most of the time, others cannot tell that I have such extensive L.E. due to my commitment to exercise - a vital part of managing the swelling - when I have on occasion had swelling I have been the subject of bullying by other women. But the detrimental psychological effect of the disease in terms of disfigurement and having to wear compression bandage garments is a common problem in L.E. sufferers, confounded by other people often finding the effects of the disease something to poke fun at or not allowed to be spoken of. Bearing in mind that even little children can develop the disease, would we want them to be bullied or shunned for their suffering?
Statistics state that one in three people will develop cancer in their lifetime. Of those, many will go on to develop L.E as a side-effect of their cancer treatment. This means that we are seeing more and more people with Lymphoedema and yet it is so unknown in society.
However, myself and others would like to change that. Although my L.E. does not define me as a person, I am happy to answer questions about the disease and to further educate about it. This month, a new book* - 'Let's Talk Lymphoedema' - is being released that has been co-written by an L.E. sufferer and one of the UK's leading experts on the disease. Hopefully, with increased education and awareness of L.E. we can improve the quality of life for L.E. sufferers.
*Let's Talk Lymphoedema: The Essential Guide to Everything You Need to Know by Gemma Levine and Peter Mortimer, published by Elliott & Thompson, May 2017.
The Lymphatic Research & Education Network ( LE&RN ): www.lymphaticnetwork.org
Rebecka Eden: Motivational & Inspirational Speaker, Cancer Survivor, Philanthropist, Writer, Spokesmodel. FOR ALL ENQUIRIES E-MAIL: RebeckaMotivational@gmail.comSuggest a correction