Lupus Foundation uses technology to spread awareness

Connectivity has been an important enabler for the Lupus Foundation of Jamaica (LFJ) in its mission of educating and advocating for persons affected by the disease. Lupus is an autoimmune disease, where the immune system becomes dysfunctional and attacks the body, – that affects approximately 6,000 Jamaicans. Known as the ‘disease of many faces’, lupus can result in hair loss, seizures, paralysis, blindness, among other conditions, as well as death.

President of the LFJ, Dr Desiree Tulloch-Reid, said the Internet has been an indispensable tool for the foundation’s work.

“Communication is a big thing for us, and the Internet and phone services provided through the FLOW Foundation have transformed the way we communicate with our community,” said Dr Tulloch-Reid.

“For example, we take up to 400 calls a year through our help centre; and have to return calls as well. We use a customer management software, which allows our members to see their details and access services, such as downloading their member card. During the pandemic when access to our library was limited and we were unable to host support group meetings in person, we were still able to provide persons the opportunity to interact with us and access critical resource information. In addition, a lot more persons usually come to our learning centre, but now we can share this information on social media and through our monthly Q&A sessions, which we also live-stream.”

ACTIVELY ENGAGING

Dr Tulloch-Reid and her team have been actively engaging the public, as October is recognised as Lupus Awareness Month.

According to her, Afro-Caribbean countries such as Jamaica have the highest lupus rates in the world. The global average age of lupus diagnosis is 22 years, and women are impacted nine times more than men.

“Lupus, unlike most chronic diseases, in considered a disease of the young,” Dr Tulloch-Reid stated. “People are being struck with this illness at the peak of their productive lives. Delayed diagnosis is also one of the issues that can affect your prognosis, which is why lupus awareness is a big part of what we do.”

The FLOW Foundation has been providing Internet and telephone services since 2014. With the help of broadband access, the LFJ has become more accessible to people who reside outside the Corporate Area. Earlier this year, the FLOW Foundation upgraded the Internet speed of the Lupus Foundation with its fibre fast technology, giving the advocacy group more capabilities to connect with and inform their members and the wider public. In addition to the invaluable use of the Internet, Dr Tulloch Reid said the savings realised each year is a welcome benefit.

“The Lupus Foundation depends on donations, so it makes a big difference when we don’t have to think about these bills (Internet and phone) every month,” she noted.

The LFJ is a member-sponsored, volunteer-run organisation founded in 1984. To learn more about lupus and how you can support the LFJ, visit https://lupusfoundationofjamaica.wildapricot.org/.