The Tribune

By JEFFARAH GIBSON

Tribune Features Writer

jgibson@tribunemedia.net

THOUGH no precise statistics currently exist on the number of people battling lupus in the Bahamas, the autoimmune disease is considered a silent killer that affects many.

Members of Lupus 242 have officially launched Lupus Awareness Month by paying a courtesy call on Minister of Health Dr Perry Gomez.

During the visit, the local support group presented Dr Gomez with Lupus 242 paraphernalia and discussed issues related to persons living with the disease in the Bahamas.  

Throughout May, the group is also hosting several activities to raise awareness. It all kicks off with the “Put On Purple” event on May 9-10.

May 10 is recognised globally as World Lupus Day.

Lupus 242 will continue with its awareness campaign during the Purple Hat Tea Party Affair on May 18 at St Matthew’s Parish Hall beginning 3pm. The tea party is the group’s biggest fundraiser and encourages attendees to be fashionable for a cause by wearing purple and orange hats or fascinators.

“Public awareness is crucial. Lupus is described as the great impostor. It mimics many other illnesses and might present as something completely different,” said Shonalee King-Johnson, Lupus 242 public relations officer.

“It sometimes takes years to finally diagnose patients because the symptoms vary from case to case. If the public is aware then they might be able to share knowledge and information with persons which could lead to a proper diagnosis,” she said.

Lupus is a disease where the body’s immune system mistakenly attacks healthy tissues and organs. As a result, various systems of the body such as joints, the brain, skin, heart and lungs are affected and unable to properly carry out their functions.

“Raising awareness also helps people to understand the challenges faced by lupus fighters,” Mrs King-Johnson said.

“On the surface, most ‘lupies’ appear to be in good health. Last year, we ran the ‘But You Don’t Look Sick’ campaign to address the same matter and produced a PSA under the same name. The patient does not often have the obvious signs of say a person battling cancer and so it’s hard to sometimes get persons to understand that lupies are also battling a life-threatening illness.”

Mrs King-Johnson said because lupus is a chronic condition, patients battle it throughout their lifetimes. In addition to inflammation and debilitating pain, lupus can also impact vital organs including the heart, lungs and kidneys.

“So while patient is fighting lupus, they might also be on dialysis because the body is attacking itself. The treatment of lupus is often through steroids, and overtime the medication used to manage the illness can have an adverse effect on the patient,” she said.

Given that there are no real statistics that exist in the Bahamas, Lupus 242 is well on its way of establishing a database of persons with the disease. So far, the support group has produced a questionnaire to collect accurate data.

The group also hope to partner with the Ministry of Health and Public Hospitals Authority to assist the process in moving along.

“Since starting the group, we’ve had Bahamians from throughout the country and even some based in the US contact us to learn more about the group and to connect with other ‘lupies’. Prior to forming the group in 2012 there was a sense of isolation among lupus patients. Lupus 242 is an excellent way to connect, learn and share,” Mrs King-Johnson said.

“I believe that over the past two years, the level of awareness is up and people are now starting to recognise either the events or the colour and attaching it to a particular cause. But there’s so much more to be done. The database is key and also education is a factor that we must continue to push,” she said.

Lupus 242 holds monthly meetings every third Thursday in the month at St Matthew’s Parish Hall.

For more information contact 525-9967, visit www.facebook.com/Lupus242 or e-mail lupus-bahamas@hotmail.com.