Weir wants more help for those suffering with lupus

With Barbados having the third highest incidence of lupus in the world, president of the Hope Foundation Shelley Weir is calling for more help for those dealing with the condition.

“My pet peeve right now is that we do not have a rheumatologist within the public sector. We only have one rheumatologist in Barbados. Right now the access to health care for lupus patients is not what it ought
to be,” she said.

Rheumatologists are doctors who diagnose and treat arthritis and other autoimmune and inflammatory diseases of the joints, muscles and bones.

“Lupus affects mostly young women in their most productive and in their reproductive years. So it’s always amazing to me when we start talking about the role of women, the importance of women, when we get into the gender narratives and lupus affects women more so than men, 90 per cent more.

“Yet still, here we are in Barbados, third highest incidence in the world, a lot of our young women are being affected but we are not getting the attention to the condition that ought to be given,” she added.

Scientifically known as systemic lupus erythematosus (SLE), lupus is a chronic autoimmune disease that causes inflammation of connective tissues and in severe cases can affect every organ and tissue of the body.

Weir disclosed that the Hope Foundation was granted support from the Commonwealth Foundation for funding a project known as The Lupus Diary. This initiative will help to further research into the illness as well as tell the story of lupus in Barbados from the perspectives of the patients, their relatives and friends.

“At the very least, it should go a long way in helping other people to cope and to understand what they’re going through,” she said.

“It’s not just them. We intend to do it in a pretty scientific way as well, because we also want to understand the symptoms that are more common in Barbados and would lead to diagnosis. We want to know, for example, the concentration of lupus in Barbados by parish.

“We are hoping that we’re able to track the first documented case here as well. So I would like to take this opportunity to invite persons who have lupus to reach out to us if they’re willing to participate in such an initiative,” she added.

Weir was speaking to a Nation team recently following the Foundation’s annual Walk For Lupus. The event is part of its ongoing efforts to raise awareness about SLE among Barbadians and by extension improve the quality of life of those diagnosed with the chronic illness.

The walk began and ended at the Main Guard, Garrison, St Michael, offering participants a scenic route through the area. The president deemed it one of the most successful walks in the three decades of the Foundation’s existence.

Weir said they needed more administrative support and funding.

“The continuing operations, and the level of work that we are doing, the kind of things that are being asked of us, it’s more than just Shelly Weir or volunteers kind of thing. We need to improve our environment to handle the kind of things that are coming at us,” she added.

She appealed for policymakers to widen their approach to non-communicable diseases (NCDs) and how they were classified.

“There needs to be a clear definition of what is meant by the NCDs and where that support will be going or to whom. Because when you have a condition like lupus that is not lifestyle-related, and this applies to sickle cell or arthritis, you really can’t eat well enough or exercise enough or whatever to prevent the onset of these conditions.

“It is time that policymakers get with it and see what can be done. You can’t prevent it, so let’s see how best we can all work together to make life a lot better,” she said.

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