Sun | Jul 21, 2019

LFJ supporting lupus warriors for 30 years

Published:Friday | March 22, 2019 | 12:05 AMVanessa James/Gleaner Writer
Lupus Foundation of Jamaica Logo
Lupus Foundation of Jamaica Logo

Lupus is a disorder of the immune system that, instead of defending the body, produces antibodies that attack and damage healthy cells. As a result, people living with lupus experience almost crippling pain, and, in many cases, their organs are affected. This series on lupus has revealed that support is a major element of living with the disease. One organisation that has been assisting lupus warriors for over 30 years is the Lupus Foundation of Jamaica (LFJ).

The LFJ is an organisation that is run completely by volunteers. It aspires to improve the outcome of lupus through providing a better awareness and a deeper understanding of the disease.

Dr Desiree Tulloch-Reid, rheumatologist and president of the LFJ, said the foundation assists its members through different programmes.

“At the Lupus Foundation of Jamaica, our mission is to improve the well-being and outcomes of Jamaicans with lupus through information, support, advocacy, and research. Information is disseminated through the Lupus Learning Centre, online resources, and through the distribution of literature in hospitals, clinics, and medical offices,” she said.

Reid further explained that support programmes are also available through professional counselling services, a WhatsApp group, and a helpline manned by volunteers.

In order to break the silence on lupus, however, advocacy is also important to improving service for those living with the disease.

“Public-awareness campaigns are a part of our advocacy services and take on the forms of World Lupus Day, Lupus Awareness Month, Laps for Lupus Awareness, the campus-awareness programme, and year-round church, community and school outreach,” Reid stated.

In an effort to offer more support to members of the foundation, financial help is offered to those who may need it.

“We maintain a small fund to assist individual members with specific direct medical costs on a case-by-case basis,” Reid said. “We also assist them in accessing other funding sources.”

The rheumatologist further explained that because lupus is a chronic condition that requires long-term management and treatment, the foundation also assists persons in identifying and accessing affordable care through government-funded or government-subsidised lupus treatment centres and pharmacies.

“We also partner with a number of pharmacies and other entities that provide discounts to foundation members,” she said.

In an attempt to reach those outside the Corporate Area, there are measures in place to provide support and assistance.

“We are very conscious of the need to be accessible to persons outside of Kingston,” Reid stated. “Our helpline is manned continually by one of our volunteers, and as of April 18, the learning centre will be fully operational again and we will have someone available to respond to queries throughout the work week via phone or email.”

There are also plans in place to have other chapters set up so those outside the Corporate Area can have access to support and resources.

The programmes offered by the foundation are sustained primarily through the time and efforts of volunteers and are funded through donations and fundraising efforts. As such, the LFJ welcomes the opportunity to engage the public in supporting these efforts through giving of funds, time, or service.

“At the moment, we have approximately 400 members. In nearly 35 years of continuous operation, the foundation has certainly impacted many lives positively, persons who, in turn, keep the organisation going through their time, effort and support,” Reid stated.

If you or anyone you know is living with lupus and is seeking assistance and support, the LFJ is available to help. Their monthly support-group meetings are held at the Lupus Learning Centre, 7 Barbados Avenue, Kingston 5, on the third Thursday of every other month commencing at 6 p.m.