Imagine waking up one morning and finding that your body is mysteriously swelling. Your jewellery or clothing suddenly begins to feel tight. When you depress your skin for a few seconds, the indentation does not immediately disappear. While there are different diseases which might present this way, this can be one of the early signs of an onset of lymphatic disease.
In my last post we talked about Eloise* who has lymphedema and started noticing symptoms at a young age. When she became pregnant, her illness made dramatic progress, aggravated by her work which requires her to stand for long hours. Now Eloise’s legs have swollen to much larger proportions.
Her situation is not unusual among lymphatic patients. Margaret*, who suffered with lymphedema for 30 years, also began presenting post pregnancy. Many other patients begin to present after a mastectomy for breast cancer treatment. This is what happened to celebrity spokesperson of the Lymphedema Education & Research Network, Kathy Bates. In this video she talks about not being able to fit into shirts easily because of her condition. “I usually wear an under shirt and a man’s shirt and it’s not the most flattering physique,” she explains. “As my surgeon told me, he said the most horrifying thing will be looking down and seeing your stomach.” Both men and women can contract lymphatic diseases. I have encountered men with leg lymphedema post prostate cancer therapy. One patient Joel* was born with visible scrotal edema and leg swelling. He was not diagnosed right away, and it became worse in his teens.
Why does this happen? Primary lymphedema is hereditary. This is what happened with Joel. Secondary lymphedema can occur after surgery (like a mastectomy,) radiation or some sort of physical trauma as it did with Eloise. People in the Caribbean can be at risk for secondary lymphedema because of lymphatic filariasis from mosquitoes. The filariasis parasite is passed along into the blood and lymph system. Once there it multiplies in the system, causing a problem with circulation.
Researchers have realised that when your lymphatic system is compromised in a certain area of the body, it has to work harder to circulate fluid. When the body can’t keep up, the characteristic swelling and fluid build-up begins to happen.
Lymphatic symptoms can be fairly mild and easy to hide, or they can manifest with severe swelling. Either way, it can be embarrassing to the patient. That’s one of the most debilitating aspects. Many sufferers are understandably focused on the way this disease distorts their bodies, and they try to conceal it however possible. This really is not the best way to approach this illness. Yes, there is no cure, but early detection and treatment can do so much to improve quality of life. If you or someone you love has a lymphatic illness, there’s no need to suffer in silence. There are millions of people who understand what you are going through. There are doctors, therapists (like me) and other health professionals who can appreciate your everyday struggles and help with a regimen that can improve your life.
In future posts, I’ll talk more about how to find relief from lymphatic illness and how to live your best life. There’s no need to feel as if you’re alone with this any more. There are many of us out there who want to help.
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.