Lupus survivor stays positive after 22 years with disease

Audrey Malcolm's ankles, fingers and wrists are badly swollen and her joints are in pain, but her captivating smile is more powerful than all her discomfort.

The 52-year-old chartered accountant has been living with lupus for the past 22 years and she says that accepting the disease has made her life much easier.

"Once upon a time, I would try to hide it, but the day that I decided to accept the disease and that I am not normal, I started to live freer. I am better able to manage myself so I can smile. I also use poetry as a method to de-stress," Malcolm said. She was one of dozens of persons who turned up at Emancipation Park yesterday at a free health fair hosted by non-profit organisation The Lupus Foundation of Jamaica (LFJ). The event was held in observation of World Lupus Day 2022, under the theme 'Lupus Level Up: Make Lupus Visible'.

Decked out in purple as a mark of solidarity with persons who are suffering from the debilitating ailment, Malcolm said that when she was diagnosed, she had no idea what lupus was.

"I was 29 and before that I used to be in a lot of pain while I was in high school but at the time they thought it was a million and one things and they would test me for sickle cell and all sort of stuff. In 1999, my doctor sent me to do an antibody test and it showed that I had an autoimmune condition and the results were sent abroad because they weren't testing for lupus in Jamaica at the time and it came back that I had lupus," she said.

Lupus, known medically as systemic lupus erythematosus (SLE), is a disorder of the immune system that causes the system to become overreactive and produce antibodies that damage healthy cells, which can be life-threatening. Lupus patients, in most cases, are unable to effectively cope with common infections.

"My skin is sensitive to the sun among other things. It has been a rough ride because I have been in and out of hospitals so that affected my job. It is a very stressful job and stress is what you have to stay away from when you have lupus, so I had to leave corporate world and start my own business," she said.

"One of the medications that I take has done some sort of damage to my heart so I now have irregular heartbeat and it actually push up my blood pressure. I have joint pains, swollen fingers, wrists and ankles and my hair started to get grey early. So that is a part of my daily journey," she added.

President of the LFJ, Dr Desiree Tulloch-Reid, says yesterday's health fair was to "draw attention to the problem of lupus, and to energise the community, policymakers, and the public at large to direct support and resources towards persons who are affected".

"Lupus is no respecter of persons. You are not born with lupus. It is not contagious, it is not cancer, but it can be quite a challenge. Lupus is a disease of the young. The average age of onset is 22 and it is everybody's business. Everybody needs to be sensitised because knowledge saves lives," Tulloch-Reid said.