22oCFighting lymphatic illness
IN THE course of some 20 years working with patients Karie Ann De Gannes has been privy to many people who feel afflicted by a “mystery illness” and believe no one can help them.
That mystery illness is often identified as lymphoedema.
De Gannes is one of a handful of certified lymphoedema specialists in TT and hopes that people will begin educating themselves about the disease and seek help for their condition or that of their loved ones.
Lymphoedema is a chronic condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs. It develops when the lymphatic system doesn’t work properly. Other symptoms can include an aching, heavy feeling in affected body parts and difficulty moving them.
“There are many people living in Trinidad with lymphatic illness who think all this is a result of obeah,” De Gannes said a media release. They have no idea that this “curse” can be treated, said De Gannes who specialises in rehabilitative massage therapy as well as lymphoedema therapy and management. Chronic lymphatic illness is not fatal, but left untreated it can be debilitating. Many sufferers are not aware that there are massage techniques, garments, tools and various methods to help manage these ailments and reduce their impact on daily life.
Locally, more people need to be aware of symptoms so they can begin to seek help as early as possible, De Gannes said. The first sign of lymphoedema 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 feel tighter. A knowledgeable medical professional would be able to identify these symptoms.
There are two main types of lymphoedema:
primary lymphoedema — caused by faulty genes affecting the development of the lymphatic system. This can develop at any age, but usually occurs in early adulthood secondary lymphoedema — caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system, often due to an infection, injury, cancer treatment, inflammation of the limb or a lack of limb movement.
Millions of people around the world live with the same ailment. Celebrities like Ingrid Bergman and Kathy Bates have had it, but for many it is still a guilty secret. Shame, superstition and lack of awareness often prevents sufferers from finding the help they need, De Gannes said. Even members of the medical establishment are often not well informed about these diseases and effective treatments, she said As a result, primary lymphoedema tends to be detected very late, she said. “Many people don’t want anyone to know about their condition. When they finally get help, they are so relieved and wish they had tried lymphatic management sooner.”
So, for many local patients relief can be an attainable goal. Organisations like the international Lymphatic Education and Research Network exist to give support, to advocate for new treatments and cures and to share information.
De Gannes founded the Lymphoedema Association of TT to support those struggling.
“I hope one day people will feel empowered to speak more openly about their condition and get the help they need,” she says. There is no need to keep the “dark” secret of lymphoedema any more.