Nine things you should know about Lymphedema

By Dixie Ann Belle

Imagine one day waking up and finding that your limbs are mysteriously swollen like balloons. Your jewellery is tight against your skin. Your clothes do not fit right. When you press on your flesh, the indentation remains.

These symptoms can be signs of lymphedema, a condition which affects the quality of life of many Caribbean people. Patients often struggle with the challenges of this disease, yet have little recourse for assistance; even their doctor might know little about it. For this reason, March is Lymphedema Awareness Month.

Local certified lymphedema therapist and board-certified massage therapist, Karie-Ann de Gannes hopes that people with lymphatic illnesses and their loved ones will use the time to learn more about the disease and how to manage it. “Lymphedema cannot be cured,” she explains, “but patients can take steps to significantly improve their quality of life”.

Here are nine things you should know about lymphedema.

1. Lymphedema occurs when your lymphatic system has been compromised.

Lymph nodes and vessels drain fluids throughout the body. When the lymphatic system is not working properly, the fluid does not drain correctly and swelling can occur at almost any part of the body.

2. Swelling is the primary sign of lymphedema.

While other ailments might present with similar symptoms, this is one of the first signs. Swelling can be mild and easy to hide, or it may be more obvious and misshapen.

3. Various causes have been linked to the onset of lymphedema.

Primary lymphedema is hereditary. Some patients contract secondary lymphedema after surgery, radiation or some sort of physical trauma. “I have worked with clients who have it presented after giving birth,” notes de Gannes, “or post cancer therapy.”

4. Lymphedema is not fatal but it can seriously affect quality of life.

The swelling can be very uncomfortable. It can make it difficult for clothing to fit. Patients can have difficulty moving easily. The extreme swelling can be disturbing, and many sufferers are constantly trying to hide their appearance. “My clients’ emotional health and sense of body image is naturally affected,” relates de Gannes. “They feel depressed and even isolated because they think they cannot share their concerns with anyone.”

5. Lymphedema can be treated with careful management.

“I use a manual technique called ‘Vodder lymphatic drainage’, compression therapy, and various tested methods to help cases manage their condition and improve quality of life,” explains de Gannes. Compression therapy involves applying bandages to affected limbs and using compression garments or even machinery to reduce swelling and keep the fluid moving. “Recently I started using medicupping”, says de Gannes. “The machine I use for that applies suction to the skin and helps promote the smooth flow of lymph.”

6. Your primary care physician can help you diagnose your lymphedema

Doctors have an important role in creating awareness. Your physician can refer you to a certified lymphedema specialist. Doctors can acknowledge the challenges patients face and assist them in finding psychological as well as physical help. They can also educate their clients about possible signs and symptoms of lymphedema which can occur after surgery. The aim is not to discourage them from doing important surgery but to help them be as aware as possible.

7. A qualified lymphedema specialist can provide vital assistance.

“I am constantly learning about how I can help my patients live fuller lives and become empowered,” affirms de Gannes who has 20 years of experience in the field.  Qualified help is very important to avoid issues. De Gannes assists her clients in identifying the cause of the swelling, determining severity and then developing a treatment plan. “I help them understand how to help themselves.” She describes patients who have found much relief through treatment and guided self-management and are delighted by considerable reduction in the tell-tale swelling. “With professional assistance and commitment, they can achieve a lot.”

8. You can support your family member with lymphedema

Encourage loved ones not to be ashamed and secretive. Appreciate that they have a challenging disease and provide emotional support. Many patients have family members who help them with wrapping at home. Learn more about the disease not only during Lymphedema Awareness Month but all year long.

9. You do not have to suffer in silence.

International organisations like the Lymphatic Education and Research Network provide support and advocate for new treatments and cures. Locally as the founder of the Lymphedema Association of Trinidad & Tobago, de Gannes shares information on lymphatic illnesses and provides advice on care and management.

She can be reached at kneading2relax@gmail.com or at 776-7285 for appointments, consultations and information about her services. “There is hope for lymphedema sufferers,” she affirms. “There is no need to struggle alone anymore.”