Lupus Foundation of Jamaica: Fighting the dreaded disease
The Lupus Foundation of Jamaica (LFJ) has been helping lupus warriors fight the dreaded disease for some 30 years.
Lupus is a disorder of the immune system which, 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. Social support is a major component in living a life with lupus.
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,” she said, “Information is disseminated through the lupus learning centre, online resources, and through the distribution of literature in hospitals, clinics and medical offices,” Dr Tulloch-Reid continued.
She further explained that support programmes are also available through professional counselling services, a WhatsApp group, and through a helpline manned by volunteers.
In order to break the silence on lupus, however, advocacy is also important to improve 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, Campus Awareness programme and year-round church, community and school outreach,” Dr Tulloch-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,” Dr Tulloch-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 of 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,” Dr Tulloch-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 workweek via phone or email.”
There are also plans in place to have other chapters set up so that those outside of the Corporate Area can have access to support and resources.
“We are in the process of cleaning our member list, including updating and organising contact information to identify our members in the different regions,” she said. “This is done with a view to seed local chapters through engagement and training of volunteers and/or local health professionals, who can extend our reach to persons with lupus, start (or restart) support groups, and host awareness events with our help.”
The LFJ hopes that with the availability of funding, they will be able to pilot this in the coming year.
The programmes offered by the foundation are sustained primarily through the time and efforts of volunteers, and financed through donations and fundraising efforts. As such, the LFJ welcomes the opportunity to engage the public in supporting these efforts through the 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,” Dr Tulloch-Reid stated.
If you or anyone you know is living with lupus and is seeking assistance and support, the Lupus Foundation of Jamaica is available. Their monthly support group meetings are held at the Learning Centre, 7 Barbados Avenue, Kingston 5, on the third Thursday of every other month, commencing at 6 p.m.