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Living With Lupus: 'It Takes Courage'

By ALESHA CADET

Tribune Features Reporter

THE CHRONIC autoimmune disease lupus is a little known disorder in the Bahamas, but there are those like Shanelle Brennen who have fought the disease with the utmost courage for more than 20 years.

It was the fear, uncertainty and feeling of isolation that prompted Ms Brennen, who also serves as the Lupus Bahamas 242 President, to revitalise the support group.

Under the slogan, "Breaking the Silence, Supporting the Cure," Ms Brennen, along with the members of Lupus Bahamas 242, have set their goals on raising awareness and providing support for Bahamians living with the disease.

With May being Lupus Awareness Month, the group will be appealing to the general public and to corporate Bahamas to support a series of planned events and activities.

Living with lupus and fighting it since the age of 19, Ms Brennen said her journey has had many valleys and peaks. Despite the pains that she has experienced, she still counts herself fortunate compared to other fighters.

"I try to look at life positively. My faith in God has helped me through so much. I rely on him, sometimes there is only him to help me through. The support of my family and friends also pulls me through many dark days," said Ms Brennen.

Although there is no known cause for the disease, genetics, environment and hormones all play a part in whether a person develops lupus. According to the group, common symptoms include debilitating pain, fatigue and unexplained flare-ups impacting random parts of the body especially internal organs. Symptoms can vary and often mimic other illnesses, making lupus hard to diagnose.

"There are four recognised forms of lupus: Cutaneous (skin) Lupus Erythematosus, Systemic Lupus Erythematosus, Drug-induced Erythematosus and Neonatal Lupus," stated a release from the local group.

Dealing with the physical effects associated with an illness like lupus can be very challenging, said Ms Brennen.

“I believe I inherited my mother's courage and endurance and my father's humility, compassion and sense of humor. All key to pressing through the pain, confusion and sometimes loneliness. My mother has been a lupus fighter about 40 years now and she is my hero," said Ms Brennen.

Speaking about the inspiration from her mother, Ms Brennen said her mother always says that when you feel your worse, you should look your best.

On the days when she feel like she can't get her feet to move, every joint hurts, her chest is racing, her is head spinning, there is no energy and she's facing the day with two hours sleep because of sometimes unbearable pain, Ms Brennen said she says a prayer, gets dressed up, thanks God for another day. Then she presses on.

In raising awareness on Bahamians living with lupus, Lupus Bahamas 242 is connecting with patients and supporters throughout the Bahamas through monthly meetings, events and social media. The group's Facebook page is Lupus Bahamas 242 - Information and Support.

Lupus Bahamas 242 is also providing support by educating lupus fighters and supporters on the illness, offering tips on coping mechanisms. One of their initial meetings included pharmacist Dr Martin Malick at the National Insurance Board. He provided tips on the impact of various medications used to treat lupus patients. In addition to education, the group is also focused on providing spiritual and emotional support.  

In addition to raising awareness, Lupus Bahamas 242 is working to establish a local database of lupus patients.

Almost everyday, Ms Brennen said she hears stories of persons living with lupus. She said it is important for newly diagnosed persons to hear the success stories, see the fighters and to know that the journey can continue.

"When others see me move forward positively despite the challenges, I believe it will encourage and inspire them and they will know they can make it too," she said.

Vice President Shonalee King Johnson said: "At our meeting, a 62-year old fighter, who was diagnosed with lupus in the 1990s, informed the group that she'd just completed the Boston Marathon. She refuses to let lupus dictate the goals she has for her life."

While Ms Johnson said there are no real statistics on the number of persons in the Bahamas living with lupus, she did say more than 90 percent of people with the disease are women.

Since the launching of the group's Facebook page in August 2011, Lupus Bahamas has been able to connect with Bahamians in Nassau, Abaco and Freeport. "We have a member who was recently diagnosed who flew in from Abaco for a few meetings. There is also a similar group in Freeport and we are looking at teaming up with them to grow the awareness level. So we've found Facebook to be useful," said Ms Johnson.

Lupus Bahamas Upcoming May Events:

  1. May 10

Purple Reigns--Since this will be just days after elections, the group's working theme will be "Are you tired of the red, the yellow or the green? Well it's time for purple reign!" Put on your Purple for Lupus Awareness Month. Lupus Bahamas is encouraging corporate Bahamas, students and everyday Bahamians to wear purple on May 10 to raise awareness.

  1. May 20

Purple Hat Tea Party Affair--a tea party and fashion show in aid of Lupus Bahamas 242. This will take place at St Matthew's Parish Hall at 3:30 pm.

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