PAMELA WILLIAMS

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PAMELA WILLIAMS has been suffering with Lupus for 33 years. At age 50, her fight with the debilitating and disabling effects of the disease continues.

Although people are beginning to hear about lupus, Pamela and other sufferers know they have a task ahead of them in gaining the attention and support they believe the disease deserves.

“Lupus is still misunderstood and though there is support through the Lupus Society of Trinidad and Tobago, there is a lack of resources to further the cause of the organisation,” Williams said. “Another situation is that there are many people living with the disease who are not yet diagnosed, and there are also many others who are in a state of denial because they still have not come to terms with the illness.”

Williams pointed out that although there is no known cure for the disease, it should not be treated like a death sentence.

“You can still lead a fulfilling life with the disease,” she said.

Symptoms of the disease have plagued Williams’ life for decades, her life is a testimony of strength and courage. She now uses a prosthetic leg and has had her right hip removed. Many other health complications have come with the disease, but even in her weakest moments, she has kept a strong will to live life. She has a successful career with the Ministry of Trade and Industry and she has been volunteering at Lupus Support group meetings for decades.

Lupus is a recurring and incurable autoimmune disease which affects various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally, the body’s immune system makes antibodies, to protect the body against viruses, bacteria, and other foreign materials.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies called “auto-antibodies” (auto means “self”) cause inflammation, pain and damage in various parts of the body. The disease is not cancerous. Because of the nature of the disease, the symptoms vary and often differ from person to person. For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems.

Although epidemiological data on lupus in TT is limited, there are scores of people living with the disease. President of the Lupus Society, Curtis Wilson, who is also a lupus sufferer, said it is easy for a person battling the disease to feel excluded socially because of the up and down periods and the unpredictability and surprise of new symptoms.

“The Lupus Society is dedicated to support services and education for lupus sufferers and their families. The mission is to improve the quality of life for people affected by lupus. Due to a lack of awareness, people often suffer for years before being correctly diagnosed,” Wilson said

Wilson said although lupus affects millions of people worldwide, both directly and indirectly, it is grossly under-recognised as a global health problem.

“This drives our need for greater awareness of lupus at all levels of society around the country. Early recognition, diagnosis and treatment of lupus helps to slow the debilitating effects of the disease,” Wilson said.

With lupus, outward appearances can be very deceiving, as victims may look healthy, as in the case of Williams.

There are three types of lupus: Systemic Lupus Erythematosus – Also called SLE, this is the type of lupus that most people mean when they talk about the disease. SLE is the most serious form of lupus. SLE can affect the skin, joints and tendons. It may also affect organs like the brain, heart, lungs and kidneys.

Then, there is Discoid Lupus – This type of lupus is a skin disease that causes a rash on the face, neck, scalp and ears. It is a much more rare form of lupus than SLE. It doesn’t affect other body organs the way that SLE can.

The rash of discoid lupus can cause scaring. According to a lupus newsletter journal, usually, the side effects of harsh treatments can be worse than the damage that lupus can cause. Williams was first diagnosed with Discoid Lupus, until her status changed to SLE. “I was first diagnosed with Discoid Lupus but eventually because of the medication I have been taking, I developed SLE,” she said.

The third type of lupus is drug-induced lupus which is similar to SLE in the ways it affects the body. But once a person stops taking the medicine, the symptoms usually go away.

According to Williams, during the dark period with the disease, her friends at the lupus society were her brightest beacon and she continues to amaze people with her zeal for life.

The regularly scheduled Lupus Society Support Group Meetings are held quarterly. The next meeting will be on December 1 at 3:30 pm at the Port-of-Spain General Hospital.