For years Eloise* has kept a dark secret. From the age of 12, she began experiencing a mysterious swelling in her left leg. To her shame and confusion, her leg ballooned up until it was noticeably bigger than her other leg, and she could not understand why.
She kept her secret from as many people as possible. She wore clothes that covered her swollen leg and hoped that it would all go away. She did not find out the name of her lymphatic condition for 20 years.
Like hundreds of people across the Caribbean, Eloise had contracted a lymphatic disease, an illness which presents itself with swelling similar to hers. She has a severe case of primary lymphedema.
Chronic lymphatic illness is not fatal, but the condition has affected many. When Eloise became pregnant, the swelling worsened until her leg was almost three times the original size. It made it very difficult for her to run her business, selling locally made preserves which required her to stand for over five hours a day. Unfortunately she is one of many who are dealing with this daily silent struggle.
The first sign of lymphedema is the swelling – when the skin is depressed for a few seconds, the indentation does not immediately disappear. Other symptoms include a tight feeling in the affected area or changes in the texture of the skin. Jewellery or clothing might even feel tighter. It’s unfortunate that a knowledgeable medical professional could not have explained all this to Eloise long ago.
Shame, superstition and lack of awareness in sufferers and among the medical establishment exacerbates the problem in our society, preventing adequate treatment. For example, primary lymphedema tends to be detected very late in many patients. There are not many certified lymphedema therapists like me in the Caribbean, and a large number of our medical professionals are not aware enough of treatments which can improve the quality of life for their patients.
Fortunately there is hope for those living with lymphatic disease. If you are one of them, know you’re not alone. March is Lymphedema Awareness Month, and it’s the perfect time for you or even your loved ones to learn more about these diseases. Together we can make a change in the life of patients.
Millions of people around the world live with the same condition. Celebrities like Ingrid Bergman and Kathy Bates have had it. Organizations like the international Lymphatic Education and Research Network and the Lymphedema Association of Trinidad and Tobago exist to give support, to advocate for new treatments and cures and to share information to support you on your journey. There are massage techniques, garments, tools and various methods you can use to help manage these ailments and reduce their impact on your daily life. Though there are not many therapists in Trinidad and Tobago, there are a few who know what you are going through.
So first of all know that there is help out there and that yes things can get better. You don’t have to be alone with the “dark” secret of lymphedema any more – not when there are so many options out there to explore. You can do it.
I have over 20 years of experience working with lymphatic illnesses, and I am a board certified massage therapist and certified lymphedema therapist.. My company Kneading to Relax specializes in rehabilitative massage therapy as well as lymphedema therapy and management. I am also the founder of the Lymphedema Association of Trinidad and Tobago. Keep checking back at my blog for information on lymphatic illnesses and advice on care and management of these diseases.