- Jamaicans living with lupus are being encouraged to join support groups, such as the Lupus Foundation, in order to benefit from practical advice and tips to help them cope with the condition.
- Consultant Rheumatologist at the University Hospital of the West Indies (UHWI), Dr. Karel DeCeulaer, tells JIS News that lupus is a complex disease, with patients suffering pain and fatigue that make everyday life challenging.
- He notes that by joining a support group, patients can better understand their condition and gain the help they need to adjust. “Interaction with fellow sufferers is very important to guide you,” he says.
Jamaicans living with lupus are being encouraged to join support groups, such as the Lupus Foundation, in order to benefit from practical advice and tips to help them cope with the condition.
Consultant Rheumatologist at the University Hospital of the West Indies (UHWI), Dr. Karel DeCeulaer, tells JIS News that lupus is a complex disease, with patients suffering pain and fatigue that make everyday life challenging.
He notes that by joining a support group, patients can better understand their condition and gain the help they need to adjust. “Interaction with fellow sufferers is very important to guide you,” he says.
“If patients understand the disease better, then they do better. If patients are prepared to have the right diet and do their exercise despite their pain and are willing to take the medication at an early stage rather than wait and do nothing, then they do better,” Dr. DeCeulaer says.
Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal healthy tissue.
The symptoms vary per person, with most patients having skin rashes, fever and swelling and pain of the joints. Many also develop fluid around the heart and lungs, and in some cases, kidney disease and dysfunction, which can become life-threatening.
Lupus can also affect some brain activities, leading to visual disturbances, memory loss, epileptic fits, severe headaches and psychological problems.
Dr. DeCeulaer, who served as President of the Lupus Foundation of Jamaica (LFJ) for 19 years, says that treatment within the first one or two years will determine how well the patient does.
He advises patients to avoid stress and ensure that “they have the right people around them”.
“If you happen to be in a very stressful situation, the first thing you have to do is sort out the stress,” he says, noting that a support group helps in this regard.
Lupus mostly affects women, with the symptoms most likely to appear between the ages of 15 and 44 years. There are an estimated 6,000 persons in Jamaica who are living with the disease.
Among them is Danielle Hall, who was diagnosed with lupus in 2008. She tells JIS News that she had been feeling ill for about two years and her symptoms pointed to the disease.
Ms. Halls says she was scared by the diagnosis, but through the help of the Lupus Foundation, she learnt how to manage her condition and is now offering support to others.
“I have learnt to cope with the disease. I have gained a lot of strengths from being able to help others through their pain and other symptoms that come with the disease,” Ms. Hall shares with JIS News.
She notes that lupus is not a “death sentence”, adding that “you can live with lupus by taking care of your body”.
Ms. Hall lauds the work of the Lupus Foundation, noting that it helps to build greater understanding of the issues faced by those who are ill, and the support that they need from family members, workplaces, and the wider public.
For Chrisendeen Douglas, who was first diagnosed in 2005 and has since had a child, the support from her church, family members, and change of diet helped her to cope with the condition.
“I have been surviving and there are a lot of us who are survivors. We are fighting this, we are not allowing lupus to deter us,” she points out.
Meanwhile, Raymond Lee, who was diagnosed some nine years ago, tells JIS News that he also had to change his diet and increase physical activity.
He wants widespread perceptions of the disease to change. “When some persons hear of lupus, the first thing that comes to mind is cancer, and that’s not the case. A lupus patient should be treated the same like anybody else,” he points out.
Mr. Lee says the Foundation has allowed him to gain important insight on how to manage the disease.
“It is a big benefit. Without the Foundation, it would be highly difficult to overcome this,” he shares.
Another male patient, Eaton McCoy, tells JIS News that he is pleased that lupus has been added to the list of conditions covered by the National Health Fund (NHF).
The Government is subsidising medication for persons living with the disease, at a cost of $340 million annually.
“It is very hard on us financial wise, so we are very glad that the Government has done something for us,” he says.
Mr. McCoy is also appreciative of the support provided by the Foundation through counselling, medication and treatment.
President of the Foundation, Dr. Desirée Tulloch-Reid, says persons with lupus have to make long-term lifestyle adjustments in order to remain as healthy as possible.
She is encouraging employers and family members to develop a better understanding of the condition in order to offer their loved ones and employees the necessary support.
The Lupus Foundation is located at 7 Barbados Avenue, New Kingston, and can be reached by telephone at (876)778-3892, (876) 754-8458; email firstname.lastname@example.org, or visiting the website www.lupusfoundationofjamaica.org.
The organisation holds its monthly support group meetings at the Girl Guides Association headquarters, 2 Waterloo Avenue, St. Andrew, on the last Thursday of each month at 5:30 p.m. Specialists are invited to explain various aspects of the disease as well as coping strategies.
The Lupus Foundation, established in 1984, also offers patients counselling and medical care, and assistance with medical expenses, treatment and drugs.