2 months ago
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The Lupus Foundation of Jamaica has dedicated over 40 years of service to improving the lives and outcomes of persons affected by lupus, through information, education, advocacy and support.
Dr Desiree Tulloch-Reid, a specialist in internal medicine, rheumatology and lupus, and also president of the foundation, said these initiatives are key to fulfilling their mandate to improve the outcomes and quality of life of persons affected by lupus in Jamaica.
“Lupus affects thousands of Jamaicans and its impact is extremely far-reaching. In contrast to most other chronic, or lifelong, conditions, lupus is unpredictable and most often strikes the young. Most persons, especially females, are diagnosed between ages of 15 and 44 years – the peak of their productive lives – with implications for the family, school, workplace, community, even economy,” Dr Tulloch-Reid said.
“One life lost is one too many, and there are still others who are struggling in different ways. So, it is essential that even as we continue our public awareness and advocacy work and remain available to provide information and support, we are also actively seeking tangible ways to identify and protect the most vulnerable,” she added.
The Lupus Foundation is in the process of piloting a ‘Peer Support Volunteer Training Programme’, which seeks to equip and empower persons living with lupus to provide mentorship and support to other persons affected by lupus.
Dr Tulloch-Reid said this will allow the foundation to extend its reach, especially to vulnerable communities such as youth, persons in inner-city and rural communities, and provide them with information, support and resources they need to do well.
To inform this and other interventions, she said, they have been conducting an islandwide needs assessment, systematically interviewing and surveying key stakeholders, including persons living with lupus, caregivers and healthcare workers, to best understand their experiences and needs.
“This is the first initiative of this kind being undertaken in the Caribbean, that is being led by Dr Sharlene Jarrett and colleagues. We plan to share the findings to apply them to our own planning, as well as to benefit others in similar settings. We hope to move from there to a registry of persons with lupus, to continue to provide important information needed for planning and advocacy efforts, and to ensure that lupus is recognised as a national priority and afforded the attention and resources it deserves,” Dr Tulloch-Reid said.
PRACTICAL SUPPORT
The Lupus Foundation has approximately 300 members currently. In addition to the support and information they provide to anyone who reaches out, their members benefit from discounts that have been negotiated with pharmacies and other organisations (using their membership cards), as well as free counselling, monthly support group meetings to help persons better cope with their diagnosis, member WhatsApp group, newsletter, and practical support to meet medical expenses and other needs, even food quite often.
Executive Director Tishauna Mullings said members also have access to medical experts and, very importantly, they have the opportunity to be part of a community, connect with other ‘Lupus Warriors’, and be part of promoting initiatives for the wider good.
“For example, the Lupus Foundation also advocates for its inclusion on the NHF-subsidised medication programme, which has already paid out over $10 million in subsidies. LFJ is a member-based organisation, and we are continuously seeking to expand our membership so we can provide more persons with direct support and have a stronger voice for advocacy efforts. Membership is only $1,000 for the year and no one is turned away from membership because of affordability,” Mullings pointed out.
Another key project is the foundation’s Immune Diagnostics programme, initiated with the assistance of the Sagicor Foundation, also to be launched this year, which will be providing access to specialised testings, such as antibody profiling to identify persons with lupus or suspected lupus who are at risk of certain serious complications. These include stroke and other blood clots, pregnancy losses, kidney disease and other complications that can be prevented with, or monitored closely for, timely intervention.
HELP CENTRE
The Lupus Foundation has also established a help centre since 2015, but has been finding it difficult to maintain their current home because of high rental costs. The help centre that serves as a hub for lupus patients to access resources on the disease, also supports the growth and development of the organisation, as the entity is moving to a professionally managed foundation with paid staff.
“We are constantly executing outreach initiatives and events, store our educational materials and equipment and other supplies. As a social services agency and as a charity, we have to keep meticulous records, physically and electronically, including personal information of clients, projects and programmes, accounting records and governance documents,’” Mullings explained.
She said that ideally, the foundation needs a 1000-square-foot facility to accommodate an information centre/audiovisual library, meeting room for training and support groups, private room for counselling, and space for staffing, the storage of equipment and to operate a food bank.
“The space would need to be accessible to persons with disabilities, so ground floor or elevator access is required. Kingston is the preferred location from a logistical standpoint,” Mullings said.
The Lupus Foundation aims to launch the centre within the next nine to 12 months, contingent on funding and space availability, including acquiring, outfitting and equipping the physical space to be fully functional.
For more information or to support this initiative, please visit LFJ’s official website https://lupusfoundationofjamaica.wildapricot.org/
English (US) ·