30 years of Hope Foundation helping with healthcare

By Kimberley Cummins

For three decades the Hope Foundation has been influencing policy and ensuring that the most updated information is available to patients and healthcare professionals.

The foundation got its start from the vision of its president Shelly Weir, who one year earlier in 1990 had been diagnosed with lupus. From her own experience Weir realised there was a lack of awareness of the condition itself. For her, the first time she heard about lupus was when she was diagnosed with it but often when one mentioned lupus one only heard about who had died from it.

This lack of awareness was not only at the layman level but among health care professionals. So, Weir along with the help of some friends decided that there needed to be a change to the point that today the level of awareness has been raised and Hope is said to be now the foremost voice for patients with lupus, Sickle cell and arthritis.

What drives Weir and her team is a commitment to the continued empowerment of communities with the tools and knowledge they need to live healthy lives.

“There is more work to be done because lupus remains such a mystery to  everybody,” she told Barbados TODAY.

“It is so unpredictable. Sometimes no matter how well you take the medication and all the care you take, lupus will behave as it wants to behave. So there is always work to be done. The science is still at work and patients being able to cope and so on, the work hasn’t stopped.

Treatments and all that are evolving, it is true. Years ago, when I was diagnosed, we used to hear patients only lived five years with this condition, then when the science got better you heard you can live ten years, and then you heard with early diagnosis and proper treatment you can live just as long as anybody else,” she added.

There are presently some 324 recorded active cases of lupus on island, which is high compared to any other place in the world. Those numbers are increased by at least 25 newly diagnosed patients annually.

In some respect, this past year was a success as they were able to launch a new project – the lupus essential kits that significantly benefited many critically ill patients.

Since its launch they have distributed 60 of these patient tools that among the many benefits, allow patients to record their readings in an electronic medical record which are monitored by the doctor so that any irregularity can be flagged early to avoid hospitalisation.

Nonetheless, like many NGOs, due to the impacts of the COVID pandemic, the year was made especially difficult for their fundraising efforts. Their two major drives, the Voices of Lupus concert in October and the Lupus walk in August, both had to be scrapped because of restrictions. In fact, Weir disclosed that as a result, they actually thought the very existence of Hope was in jeopardy and that the foundation would have celebrated its milestone shuttered.

“We have been hit extremely hard by COVID. We’ve always operated with the bare minimum but we have always done very good work. . . . As a charity it is always so tenuous, we never have enough to do what we want to do so it is always a case of make do. And the people who have always been supporting us, of course they have been hit hard. So it has really been a challenge to continue. A whole lot of things converged because of the lockdown,” Weir explained.

That’s why, with uncertainty still looming around the 2021 editions of Voices of Lupus and the Lupus walk due to COVID restrictions, Hope has now launched a new campaign called Keeping Hope Alive: 30 for 30 to mark its 30th anniversary, celebrate their accomplishments, and spread the word of the work they have been doing to make a difference in the lives of sufferers of chronic illnesses.

They are welcoming assistance in a bid to help raise needed funds for persons who suffer from lupus, sickle cell and arthritis. People can assist by sharing the news of the campaign, and giving at least $1 for each of their 30 years by cash, cheque or bank transfer.

Lupus is not contagious, or hereditary, so there is no predicting who will get lupus so it is important people be aware of the symptoms, so doctors can diagnose it earlier.

Therefore, the fight isn’t over yet and the Foundation remains committed to not just the lupus challenge but also sickle cell and arthritis. In fact, in the next couple of months they expect to roll out a programme to bring more attention to rheumatoid arthritis as they move into the next phase of the distribution of lupus essential kits.

On lupus awareness Weir noted: “If the doctor is not thinking about lupus it will be difficult for that diagnosis since not every case of lupus will be a bad case, you can have a mild case. You can have a real bad period of time that you are experiencing little symptoms and then it can literally go into remission. Yes, we have brought a lot of awareness, not only for the general public but among health care professionals. I think we have come a long, long way in that regard.

“Lupus cases are picked up more easily than they were before. You do not hear people say they were misdiagnosed like you used to hear back then like 30 years ago. Also, I think the rule of thumb has sunk in for healthcare professionals that if you are seeing a young black woman complaining of joint pains, test for lupus before dismissing that person as just having arthritis,” Weir said.

To register your support visit https://www.cognitoforms.com/HopeFoundation1/KeepingHopeAlive30For30