(JAMAICA OBSERVER) — Even as Jamaica accounts for one of the highest rates of lupus worldwide, according to noted rheumatologist Dr Desiree Tulloch-Reid, Jamaican doctors are not equipped to properly diagnose the autoimmune disease because of the unavailability of a particular type of testing equipment on the island.
Samples therefore have to be sent to the United States.
Tulloch-Reid, who is president of the Lupus Foundation of Jamaica, made the revelation last week at the Jamaica Observer Monday Exchange held to discuss this year’s staging of the Sagicor Sigma Corporate Run. The foundation, Diabetes Association of Jamaica, and May Pen Hospital in Clarendon are the beneficiaries of the fund-raising event scheduled for February 17, with a target of $52 million.
Tulloch-Reid is hoping the proceeds from the run will contribute to acquiring the equipment.
“One of the programmes to which the proceeds from the Sigma run is hoped to contribute is to procuring a piece of critical equipment that will make sure that we are able to diagnose lupus earlier, with greater accuracy, and also identify persons who are at risk of more serious complications,” Dr Tulloch-Reid said.
“This will allow proper and accurate testing to be accessible in Jamaica. A number of the tests that we need to run to properly assess a patient who has lupus have to be done overseas, and this makes it inaccessible to so many,” she added.
Dr Tulloch-Reid said that the estimated prevalence for lupus in Jamaica is as high as one in 250 people.
In a 2015 media interview, Tulloch-Reid said of about 2,000 people in a clinic she ran at Kingston Public Hospital, 40 per cent had lupus.
“It’s a lot of people suffering from the disease,” she said then. “It has made a world of difference that there is access to care.”
Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms include inflammation, swelling, and damage to the joints, skin, kidneys, blood, heart, and lungs.
“Lupus is not a respecter of persons. You are not born with it;.iIt’s a condition that comes on and it can strike suddenly. Even though it can affect anybody, the vast majority of [people] who are affected by lupus are women. Most commonly, the age when people are affected are in their teens or early 20s going into 30s. This is when lupus strikes,” Dr Tulloch-Reid stated.
The Economic Times cites the reason for this gender difference as a possible association between sex chromosomes and sex hormones. Women with lupus have higher oestrogen levels.
“We know that people with lupus can vary a lot in terms of how they’re affected and how severely they are affected. But for pretty much everybody, the key to a good outcome — it is a treatable disease — is really early diagnosis, early access to the right treatment and ongoing support,” she said.
Dr Tulloch-Reid said that it can cost a Jamaican with lupus over $100,000 for treatment monthly.
“For many people, cost of medication is a big problem. In the case of even identifying the person early, being able to test in a way that can help differentiate lupus from other conditions in a very precise way and help us identify people who are at risk for certain serious complications — such as kidney involvement, stroke, miscarriages and pulmonary embolisms — can help with cost,” she said.
Just last week, finalist in the 2014 Miss Jamaica Universe contest Zandrea Bailey lost her battle with the disease. She was 29. And last October comedienne Elva Ruddock succumbed to her illness.
Quick facts about lupus
• Lupus affects nine times more women than men, and more women of colour than white women.
• Women of childbearing age — 13 to 49 — are far more likely to be affected.
• Genetics also play a role. If you’re a woman with no family history of lupus, your chances of getting lupus are about one in 400. If your parents or a sibling has lupus, your chances jump to one in 25.
African American and Latina women with no family history of lupus have about a one in 250 chance of developing the disease.
• Lupus symptoms can differ greatly from person to person. Some symptoms are common to other conditions, too, which can make diagnosis difficult.
• Lupus is a diseas of flares and remissions.
Lupus flare-ups can be mild, or they can be severe. At least 75 per cent of people with lupus have arthritis and skin rashes; half have kidney problems. Lupus patients are also more vulnerable to infection than most people.
• It is not possible for doctors to use one test to determine if you have lupus. Doctors must consider many different sources of information to make a diagnosis. Sometimes, it can take months — or even years — before your doctor has all the information needed to make a lupus diagnosis.
• Treatment depends on the type of flare-ups you have.
Mild swelling and joint pain may be treated with acetaminophen or a non-steroidal, anti-inflammatory drug like naproxen, or ibuprofen.
Plaquenil, an anti-malarial drug, treats skin rashes, arthritis, and sometimes fatigue.
Rashes may be treated with topical steroid creams. And corticosteroids, like prednisone, and immunosuppressants treat serious kidney problems.
• Ninety-five per cent of lupus patients have a five-year survival rate today, compared to five per cent in the 1950s.
• Many people with lupus have a mild form.
• Proper medication can even help people with severe lupus control their flare-ups and live productive lives.
Signs of lupus
The American College of Rheumatology has set forth an official list of 11 criteria for classifying a possible systemic lupus diagnosis. The presence of at least four of these criteria can lead to a possible lupus diagnosis.
• Malar rash: butterfly-shaped rash across cheeks and nose
• Discoid (skin) rash: raised red patches
• Photosensitivity: skin rash as result of unusual reaction to sunlight
• Mouth or nose ulcers: usually painless
• Arthritis (non-erosive): in two or more joints, along with tenderness, swelling, or effusion. With non-erosive arthritis, the bones around joints don’t get destroyed.
• Cardiopulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
• Neurologic disorder: seizures and/or psychosis
• Renal (kidney) disorder: excessive protein in the urine, or cellular casts in a urinanalysis
• Heamatologic (blood) disorder: haemolytic anaemia, low white blood cell count, or low platelet count
• Immunologic disorder: antibodies to double-stranded DNA, antibodies to Sm, or antibodies to cardiolipin
• Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. However, a positive ANA test does not necessarily mean you have lupus.
— Lupus Research