Connectivity Lifts Lupus Foundation
The internet has been an important ally for the Lupus Foundation of Jamaica 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.
The Lupus Foundation of Jamaica is a member-sponsored, volunteer-run organisation founded in 1984 and since 2014 the Flow Foundation has been providing internet and telephone services to support its advocacy work. With the help of the internet, the Lupus Foundation has become more accessible for Jamaicans outside of the Corporate Area and is making a bigger educational impact by expanding its learning resources online.
President of the Lupus Foundation of Jamaica, 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 has transformed the way we communicate with our community,” said Dr Tulloch-Reid.
“For example, 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, we shifted our open house to the virtual space, while still providing persons the opportunity to interact with us and access resource information. In addition, a lot more persons usually come to our learning center, but now we can share this information on social media and through our monthly Q&A sessions which we also live stream.”
Dr Tulloch-Reid and her team have been actively engaging the public as October is celebrated as Lupus Awareness Month. On Sunday October 23 at the University of the West Indies, the Foundation hosted its annual symposium aimed at empowering patients and their family, healthcare workers and the public with knowledge of the disease and its impact.
According to Dr Tulloch-Reid, Afro-Caribbean countries, such as Jamaica, have the highest lupus rates in the world. The global average age of diagnosis is 22 and women are impacted nine times more than men.
“It’s a young people disease,” 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.”
Earlier this year the Flow Foundation upgraded the internet speeds 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 welcomed benefit.
“The Lupus Foundation survives off donations, so it makes a big difference that we don’t have to think about these (internet and phone) bills every month,” noted Dr Tulloch-Reid.
LeVaughn Flynn, Flow’s Public Relations Manager, added: “As part of its commitment to nation building and driving greater digital inclusion, the Flow Foundation proudly supports numerous NGOs, schools, communities and worthy causes that positively impact Jamaicans and contribute to creating a better Jamaica for all. We are delighted to see all the great work being done by the Lupus Foundation of Jamaica and that our technology is central to it achieving its goal of educating and supporting people impacted by the disease.”
