The Tribune

By ALESHA CADET

Tribune Features Reporter

acadet@tribunemedia.net

FROM Goodman’s Bay to Sandyport, “Lupies” gathered in numbers as they took part in the second annual “Walk For Lupus” last Saturday.

Headed by the non profit group Lupus Bahamas 242, the event was held in aid of the global research to fight the chronic autoimmune disease.

According to the group, although there is no known cause for the disease, genetics, environment and hormones all play a part in whether a person develops lupus. Common symptoms include debilitating pain, fatigue and unexplained flare-ups impacting random parts of the body especially internal organs.

There are no real statistics on the number of persons in the Bahamas with lupus, but the group is working on establishing a database.

Beginning at 6:30 am, the lupus fighters and their biggest supporters walked around the Goodman’s Bay perimeter, as well the Blake Road area. Wearing their lupus t-shirts, they enjoyed healthy snacks and free heath screenings all day long.

Supporters walking for their friends with lupus wore supportive custom-made shirts with sayings such as “Team Shanae” or “Team Crystal”.

Shonalee King Johnson, Lupus Bahamas 242 vice president said the walkathon was one of many events the organisation has hosted for the year.

“There are two months that we specifically focus on events geared towards lupus awareness. The first month is May, which is global lupus awareness month. We did several events: we had POP (Put on Purple) for Lupus Day, and we had the government officially declare May 10 as Lupus Awareness Day in the Bahamas. So we encouraged persons to wear purple and let people know that they are wearing purple to raise lupus awareness,” said Ms Johnson.

Earlier this month, Ms Johnson said they hosted a “Purple Hat Tea Party” and the balloon release “Hope Floats” event. Hope Floats was held to remember Bahamians who lost the battle with lupus.

“The turnout, response and support was amazing and obviously we did a lot of media interviews within that period. In addition to our events, on an ongoing basis, we have our monthly meetings. We have persons come in to talk about living and coping with lupus. We have pharmacists come in to speak about medications they recommend. We also had motivational and health and wellness speakers come in to join in on the meetings and talk about lifestyle changes,” said Ms Johnson.
In regards to their “Faces of Lupus Calendar,” Ms Johnson said this year they decided to put the focus on the fighters as well as supporters.

Linda Dean, one of the ‘Faces of Lupus’, has been fighting the disease since 2004. She said because of her illness at the time, she was not able to care for her family and she felt hopeless.

“An uncle visited and brought with him healing scriptures. I recited them and prayed consistently and gained peace and inner strength. I quickly focused on recovery. My family began to believe that I could get better and I did too,” said Ms Dean.

She said there is so much to live for, and encouraged lupies to stay courageous in the fight.
Another lupus fighter, Rashan Maria Williams, said the trials they face make them stronger.
“We are the unique breed, special gems, a one of a kind chosen few to stand out and be strong. Remember lupus does not define who we are but who we are defines our lupus experience,” said Ms Williams.

Ms Johnson said organisations like Lupus Bahamas 242 that support lupus awareness gives the fighters a feeling that they now have a place.

“While lupus is common, everyday someone is reaching out to us either on Facebook (Lupus Bahamas 242) or our phone line that was provided to us by BTC. They feel like they are the only persons they know to have lupus, so they don’t have a frame of reference and an understanding of it.
Because the symptoms are so random and they mimic some of the other illnesses, by the time someone is diagnosed they are just emotionally, mentally and physically exhausted and depleted. To have an outlet and to know persons who are going through the same thing, helps them cope,” said Ms Johnson.

She said a person living with lupus may have a supportive family, but if that particular family member is not going through it, it makes it harder for them to be able to relate. “Sometimes our meetings are about venting, sometimes they are all about support,” said Ms Johnson.

“One of our youngest patients was six years old when she was diagnosed. For her mother, not knowing anyone else in her family with lupus and not having an understanding of it, was hard. We have members all around the Bahamas. We have a member in Abaco the other day that had a health crisis and just to know that we were here praying for her and sending her things, that is important,” said Ms Johnson.