Knowledge of Lupus Saves Lives
October was observed as Lupus Awareness Month in Jamaica and other Commonwealth Countries. Lupus Foundation of Jamaica is seeking to highlight Lupus and promote greater knowledge and a deeper understanding of the disease, under this year’s mantra:
“KNOWLEDGE OF LUPUS SAVES LIVES”
What is Lupus?
Lupus, sometimes termed SLE is a disorder of the immune system that affects many Jamaicans.
It is not cancer and it is not contagious. It is an autoimmune disease that occurs when our immune system that should defend us turns against us by mistake and starts attacking healthy organs and tissues. This can cause inflammation and damage in almost any organ or tissue – the skin, joints, blood cells, and internal organs such as kidneys, heart, lung and brain. And so lupus can affect each person differently. In some persons it’s severe, while in others it is much milder.
Who is affected?
Lupus can affect anyone but is most often diagnosed in the young: the average age at diagnosis is 22, with up to 20% of persons diagnosed in childhood. It is a chronic condition, meaning that it is expected to last a lifetime.
How is Lupus Diagnosed?
Lupus may be suspected when someone presents with a combination of certain symptoms such as unusual fatigue, unexplained fevers, joint pain, unusual skin rashes, sudden or patchy hair loss, or colour changes in the digits when cold, abnormal disorders or pregnancy losses.
The diagnosis is confirmed when specially selected tests including certain antibodies reveal immune dysfunction as the cause of the symptoms. For some persons the disease reveals itself slowly and can take years to diagnose, while for other persons it can present suddenly, even with life-threatening complications.
The course of lupus may fluctuate in any one person. Periods of increased disease activity are known as flares, and can be triggered by stress, sun-exposure, infections, by stopping treatment or without a clear cause.
Treating Lupus
While we don’t yet have the cure for lupus, treatments have come a long way, and now it’s possible for most people to achieve control of their disease with the right treatments and careful monitoring by an experienced medical team.
Life with Lupus
Persons with lupus may deal with many things: debilitating symptoms especially during flares; disability if they suffer major complications such as bone damage, side effects from treatment, high cost of treatments; disruption of school or work, and impact on the family, including finances and relationships. The Covid-19 pandemic has compounded issues for many lupus patients who may experience anxiety, increased isolation, financial difficulties and even difficulty accessing care.
Lupus Awareness Month
During Lupus Awareness Month, members of the public were encouraged to help promote the educational effort and to show support for Lupus Warriors, by participating in the many events, support the social media campaign, request posters or printed material and wear purple on Fridays during the month of October, and of course, donate to the cause.
Lupus Foundation of Jamaica
Lupus Foundation of Jamaica is a member-based, volunteer-run, donor-funded charity dedicated to improving the lives and outcomes of persons affected by lupus through information, support, advocacy and research. The Foundation carries out public awareness campaigns and community outreach and provides to the public access to information in print and online, help finding a treatment centre, hospital visits or calls by volunteers. In addition, members benefit from access to free health and psychological counselling, negotiated pharmacy discounts, monthly support group meetings, and educational sessions with health professionals, a regular news via email or text and member Medical Assistance Fund.
Contact
The Foundation can be contacted at their Learning Centre at 7 Barbados Avenue, or (876)754-8458
or info@lupusfoundationjamaica.org or by visiting their website lupusfoundationjamaica.org or social media pages to join, volunteer or donate.
Dr Désirée Tulloch Reid, MBBS, FACR.
She is board certified both locally and in North America as a consultant in internal medicine, specialising in Rheumatology and Lupus; and is the President of the Lupus Foundation of Jamaica.
