Lupus Essential Kits Project launched

Lupus patients in this country are being armed with vital tools to help in the self-management of their condition.

That’s according to President of the Hope Foundation, Shelley Weir. She spoke to this yesterday morning during a press conference at Hope Foundation’s office, to launch the Lupus Essential Kits Project and the distribution of the first 100 kits, which were sponsored by CIBC FirstCaribbean Bank. The cost of each kit is $200 and contains a blood pressure machine and urine test strips, as well as a thermometer, a 4-inch rim hat and a mask.

According to Weir, they will be providing the 300 or so patients in Barbados that are known to have lupus with kits, and as patients are diagnosed they will also be given kits. She made the point while noting that as many as 25 cases are diagnosed annually.

“...Dr. Flower has indicated that there are 25 patients who are critical that need those kits like yesterday, another 75 who are essential and need those kits as soon as possible, and that’s why the hundred was actually a magic number for us,” she said.

She went on to explain that the project also encourages patients to keep track of their data, by inputting it into an online electronic health record that can be accessed by their doctor.

Adding to Weir’s comments, rheumatologist and member of the Foundation’s Medical Advisory Board, Dr. Cindy Flower, told those gathered, including the European Union’s Ambassador to Barbados Malgorzata Wasilewska, that lupus is the second most common autoimmune disease and affects primarily women of child-bearing age. She said too that the disease is more common in people of African descent, who get the disease at an earlier age than White patients and usually have a more severe form of disease.

“So for that reason the Caribbean is an area of clustering of severe complicated patients with lupus. We diagnose up to 25 patients a year [in Barbados] and half of those patients will develop severe kidney disease; the type of kidney disease that without aggressive intervention may end up needing dialysis or renal transplant,” she explained.

Noting that this severe lupus is usually the cause of repeated hospitalisations of patients, Dr. Flower said Hope Foundation thought it was paramount to encourage “aggressive management” of lupus to help diagnose complications early.

“We realised that we want patients to take ownership of their disease and we can help them do so. The idea was to formulate a kit that they would keep at home and they would help monitor themselves. The thing that is important to monitor when you have lupus is your blood pressure [and] you have to check your urine for protein... Though most people think kidney diseases causes back pain, that is a layman’s thing, if you have a kidney stone that would cause back pain, but most times kidney disease gives no symptoms until the kidney is failing. So we need patients to be diagnosed early,” she maintained.

Dr. Flower said that a simple dipstick test of the urine for protein at home, could bring the patient to medical attention earlier if any red flags appear.

“We want them to take their temperature when they are unwell, so we know if there is a fever and it is important to protect themselves from excessive sun exposure because the sun is the trigger of a lupus flare, we tell them wear nice hats with a four inch rim and of course because of COVID they have to wear a mask... What we want to tell patients is that we are there are for you, we want you to be part of your self-management, we are going to teach you how to fish, but we are giving you a kit, so we are giving you a fishing rod,” she stated.

Meanwhile, CIBC FirstCaribbean Bank’s Director of Corporate Investment Banking, Barrington Watson in his remarks lauded Hope Foundation for the good work it has been doing, noting that the Bank was pleased to be part of the project and to donate the funds to purchase the kits. His comments came as he wished the Foundation every success in the project, which he noted will be instrumental in helping doctors to remotely monitor their patients and be alerted early to changes in their conditions.

“In the long run this will be better for the country as it should be able to relieve the suffering brought on by the disease, cut down on hospitalisations and the amount of persons who may eventually need to go on dialysis,” he stated. (JRT)