In recognition of World Lupus Day which was celebrated on May 10 and the global Put on Purple Day observed on the third Friday of May, Saint Lucia is once again standing in solidarity with those affected by lupus, a chronic autoimmune condition that remains under-recognised and misunderstood.
Dr Cleopatra Altenor, general practitioner and president of the Saint Lucia Arthritis and Lupus Association (SLALA), explained: “Purple is the colour in terms of symbol for lupus and so we just encourage persons everywhere to wear purple, maybe purple T-shirt, accessories, to help to bring awareness to the disease.”
Lupus, often dubbed the “invisible illness”, can take years to diagnose. While it may seem like the condition is becoming more common, Altenor attributed the increase more to better awareness than to a true rise in cases.
“It’s definitely becoming more prevalent…,” she said. “Some of it could be because there’s more awareness then you actually have people being diagnosed properly… sometimes when people come to us, they’ve actually been having symptoms for many years and…maybe their test were not done appropriately so they are only now being diagnosed.” Medical colleagues are thinking of lupus earlier by recommending antibody testing and referring patients to specialists, she said.
While SLALA continues its advocacy, Altenor acknowledged that public support in terms of putting out notices and sensitising the public, though growing, still falls short of what’s needed.
“You want to be grateful for whatever support that you get. I still think there’s a long way to go in terms of the public being aware. Even our ministry, they do try but I think a lot of the times when we talk about non-communicable diseases (NCDs) you hear a lot about diabetes, high blood pressure, cancers and often you don’t hear about auto immune diseases like lupus and rheumatoid arthritis and others.”
Altenor also highlighted how external factors like viral infections including COVID-19 and heightened stress levels like from the workplace or home could potentially act as triggers for autoimmune diseases like lupus. There’s still no known cause, but stress, whether emotional, physical, or psychological, can be a significant trigger. “There’s still a lot of challenges financially that patients have to cope with,” she said.
SLALA is working to change that narrative through a series of events designed to educate and build community. A Lupus Townhall is scheduled for May 31 at the Tapion Conference Room, where individuals living with lupus will share personal stories and insights. The event is free and open to the public. She noted it’s not just for people who have lupus but for friends, family members and anyone who wants to better understand the condition and how to support loved ones suffering with the disease.
A community walk, “Strides for Lupus,” is also planned for Sunday, June 8. The walk will start at the Courts Car Park in Marisule at 6 a.m and end at Pigeon Point. Registration is available via the association’s social media pages @arthritisandlupusassociation on Facebook and @slala.slu on Instagram or by calling the office at 486-7000.
To further engage the public, SLALA is also hosting a social media giveaway, with a chance to win a day pass for two at Royalton Resort. To enter, participants simply need to like and share the contest post, comment “Lupus strong”, and tag friends. No lupus diagnosis is required.
Altenor also pointed out the intersection of lupus awareness and Mental Health Awareness Month, both observed in May. “I feel the two actually go hand-in-hand in terms of how we …manage our mental health, which can also impact how we manage our auto immune diseases.”
“There is always going to be room for improvement and there is still room for people who have lupus to feel safe, seen and heard without being judged,” Altenor stated.
For more information on upcoming events or to get involved, contact the Saint Lucia Arthritis and Lupus Association at 486-7000 or follow them on Facebook and Instagram.
