Lupus patients on average lose over $21,000 annually in medical expenses and work hours, according to Vice President of Lupus 242 Shonalee Johnson.

Johnson said that even with insurance, medication can cost people with lupus between $200 and $300 per month.

"We are trying to push and lobby on behalf of the group for medication commonly used by lupus patients to be included on the prescription drug care plan," she said. "There has only been one new medicine brought out in the last 20 years. It is called Benlysta and it is extremely expensive."

The National Institutes of Health estimates the cost to be about $35,000 per year. Lupus is a chronic inflammatory disease that occurs when the body's immune system attacks its own tissues and organs. A combination of genetics, family history and environmental things can trigger the autoimmune process that causes the lupus. Triggers include physical stress, emotional stress, sunlight and infections. It can be difficult to diagnose because its signs and symptoms often mimic those of other ailments.

The most distinctive sign of lupus is the facial rash that resembles the wings of a butterfly unfolding across both cheeks.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight.

While there's no cure for lupus, treatments can help control symptoms. And no two cases are exactly alike.

"There are not a lot of rheumatologists here currently practicing, so a lot of our patients see internists as their primary health care provider and they would also see whatever area the lupus is impacting most," Johnson said.

Complications that can develop from lupus include neuro-psychiatric features like seizures, psychosis with hallucination, delirium and meningitis. Sometimes antibodies can attack the spine, making patients susceptible to developing weakness in their lower bodies, making it difficult to walk. Strokes and a cognitive disorder similar to Alzheimer's can also happen.

Untreated patients or those who are lax in their follow-ups, even with a relapse can eventually get lung and heart diseases like pleurisy or pericarditis, respectively; the diseases involve the inflammation of the linings of the organs.

According to general practitioner, Dr. Patrick Whitfield, who works out of the Oxford Medical Center, the illness occurs more commonly in females than in males, with a ratio of 11 females to one male. The disease affects women in their childbearing years - their 20s and 30s. Johnson said there is no definitive number on how many people in The Bahamas are diagnosed with the disease, which is a part of the challenge Lupus 242 faces when trying to lobby for things for its members.

In the United States, statistics show 52 people per 100,000 are diagnosed with lupus. With this in mind, Whitfield noted previously that if the Bahamian population follows a similar trend, it is likely that a population of about 400,000 would amount to more than 200 people being diagnosed with the illness.

The organization was established four years ago with about 30 to 40 active members. Lupus 242 continues to advocate for lupus awareness throughout The Bahamas.

"With more awareness you get more recognition and you are able to advocate for things that members or persons living with lupus would need," Johnson said.

May is being observed as Lupus Awareness Month. Activities that have already taken place to raise awareness this month include a walk for lupus, a church service, a P.O.P. (Put on Purple) for Lupus Day, and a purple hat tea party.

The final event will be a balloon release called Hope Floats in honor of Kent Saunders, a 15-year-old student of Jordan Prince William High School who died from lupus in December 2014. One hundred balloons will be released to signify 100 memories of people who died from lupus. The event will take place at 11 a.m. on May 25 at Fort Charlotte.

Johnson said the organization wants Bahamians to know that "if you are living with lupus or know someone who has lupus, there is a support network available".

They group meets every third Thursday, at 6:30 p.m. at St. Matthew's Parish Hall on Shirley Street.
Information on the group is available at www.facebook.com/lupus242.

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