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The Jamaica Gleaner, February 15, 2019 -  “I live as if I would die tomorrow; I live as if I could live forever.”-Danielle Hall

Sounds contradictory right? But that is the mantra that guides Danielle Hall as she is living with lupus.

According to Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage any part of the body whether it is the skin, joints, and/or organs. Our immune system creates antibodies which protects the body from things that do not belong, but with lupus, the immune system cannot tell the difference between the bad tissues and the healthy tissues and, as a result, it creates antibodies that attack and destroy the healthy tissues. These usually cause inflammation, pain, and even worse, damage in various organs or parts of the body.

In as little as four months, two prominent Jamaicans have died from this illness; comedienne and media personality Elva Ruddock died on October 7, 2018 and Miss Jamaica 2014 finalist, Zandrea Bailey died January 13. Both of whom did not allow the illness to take over their lives, but like Hall, has aimed to live a fulfilling life despite the often debilitating symptoms of lupus.

Hall shared with The Gleaner that she was diagnosed with lupus after she had an infection.

“I was officially diagnosed with lupus in 2011 after contracting meningitis in 2008,” Hall stated. After treating the meningitis, she had kidney infections and seizures which included severe pain. “I had back-to-back kidney infections following the meningitis and was later told that I have fibromyalgia and rheumatoid arthritis because they did not know what was happening,” Hall stated.

She explained that she started to experience almost all the signs and symptoms of lupus, except the butterfly rash, but it was not until a second antinuclear antibody (ANA) test-the first test was negative- was done, that she got the confirmation that she has lupus and her life changed since then.

“I remember when I was at UWI-at the time I was a part-time student- and I was working while studying,” she stated, “I would go to work from 7:00 a.m. and leave at 8 a.m. for my class at 9 a.m., only to leave UWI at 11 a.m. to go back to work until 4:30 p.m. when I would leave for classes until 9 p.m.,” Hall said.

As a result of this, Hall had a seizure and had to sit out the remainder of the semester due to stress and being overworked.

She further explained that surviving lupus is about support and knowing one's condition.

“No lupus case is the same so what affects me, may not affect someone else,” she said, “But having someone to talk to, someone to be there for you through the small things, it makes a world of difference.”

Hall’s main support system was her mother, but tragedy struck in 2016 when her mother died.

“My mother was my rock through my diagnosis and the ups and downs of my illness,” Hall explained. “I remember coming out of the hospital January 2016 after a huge flare up and by February my mother was admitted.”

She said it was difficult making several trips to the hospital to visit her mother, while she juggled everyday life with lupus. Her mother died a week after Hall completed her final exams at UWI.

“I remember that I was diagnosed with the Zika virus during the days leading up to my mother’s funeral and I didn’t go to the hospital because I couldn’t picture being at the hospital and my mother wouldn’t be there to visit,” Hall recalled.

She is grateful for the support from her immediate and church family and close friends, along with groups that she is a part of because they have helped her to cope. She looks to the Lupus Foundation of Jamaica, but mainly depends on the ladies in her WhatsApp group to encourage her while she does the same for them.

“We started with approximately seven persons and now there are over 20 of us in the group, but we lost four people between 2014 and now,” Hall explained.

According to lupus.org at least five million people worldwide are affected by lupus and 16,000 new cases are reported each year.

Hall stated that sharing her story is not for pity, but to encourage others who are living with lupus, and motivate them. (Link to Full Article) 

EVEN as the country accounts for one of the highest rates of lupus worldwide, according to noted rheumatologist Dr Desiree Tulloch-Reid, Jamaican doctors are not equipped to properly diagnose the autoimmune disease because of the unavailability of a particular type of testing equipment on the island. (Click to Read More) 

The Jamaica Gleaner, May 11, 2016 - In observance of World Lupus Day yesterday, the Lupus Foundation of Jamaica (LFJ) opened new offices. This is the first time that an office and learning centre of this nature will be made available to serve the needs of persons living with lupus, as well as the general public.

World Lupus Day is about bringing further awareness to the plight of persons living with the disease, noted Dr Stacy Davis, president of the LFJ, "and we at LFJ also join the rest of the world with one voice in championing the cause for persons living with lupus".

She continued, "There is no boundary to the impact of lupus. Lupus is a global health problem that affects people of all nationalities, races, ethnicities, genders and ages. Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results. While lupus knows no boundaries, knowing all you can about lupus can help control its impact."

Davis said the opening of LFJ's new centre was a significant milestone for persons living with lupus.

"This was an important goal for the foundation that has been in gestation for more than 30 years. Now finally patients, their families and any one affected can come in and learn more about the disease and treatment options," she said.

The Lupus Foundation of Jamaica office is located at 7 Barbados Avenue, New Kingston, and is open from 9 a.m. to 5 p.m. The Learning Centre is open from 10 a.m. to 12 noon and 1 p.m. to 4 p.m. Mondays to Fridays.

WHAT IS LUPUS?

Systemic lupus erythematosus, or simply lupus, is a disorder of the immune system and one of the least known major diseases. It is a chronic (lifelong) disorder of the immune system that results in abnormal inflammation of tissues almost anywhere in the body, including skin, joints, kidneys, blood, lungs, heart and brain.

Common symptoms of lupus include fatigue (tiredness), rashes on the face and body, hair loss, joint pain or swelling of the legs. But lupus can be extremely variable in its severity and manifestations, and may produce different signs and symptoms in different persons; some persons are only mildly affected, while others can feel very ill or suffer life-threatening or disabling complications. Even for one person, symptoms may vary at different times in their lives, and there may be periods of increased or severe symptoms known as flares.

Lupus most commonly first affects young women at the prime of their lives, 20s and 30s, when they may be starting careers or have young families; however, all ages, including children and men, can be affected as well.

WHAT CAUSES LUPUS,

AND CAN IT BE TREATED?

The cause of lupus is not fully understood, but genes as well as environmental factors may both play a role. It is not cancer and it is not contagious. There is no definite way to avoid getting lupus or to predict whether you will get it, but by being aware you can recognise symptoms quickly and be diagnosed and treated early, which can make a big difference.

Although there is no a cure for lupus, knowledge and understanding of the disease is greater than ever before; and treatments now exist that can be very effective in keeping the disease under control, allowing persons with lupus to live longer and better than ever. In addition, for someone who has lupus, good understanding of their condition, adequate support and expert care and monitoring go a long way to improve outcomes and quality of life.

(Link to Original Article)