Health & WellnessLifestyles

Increasing understanding of a cruel and mysterious disease

Lupus 242 recognizes World Lupus Day during awareness month

Ten years ago, Lupus 242 launched, with an immediate goal to raise the profile of lupus as a condition, and establish itself as a support group for people living with the disease in The Bahamas allowing them to connect with other people who are battling similar issues and facing similar health challenges.

From the beginning, Lupus 242’s focus has been on the needs of its members.

“There were many [people] suffering in silence and many being the first person in their family or immediate circle diagnosed with lupus. While doing this, we also wanted to look at ways in which we could support fighters,” said Shonalee Johnson.

Today, Lupus 242 has between 50 to 60 active members.

As Lupus 242 celebrates World Lupus Day today, to create awareness of the devastating effects of lupus and encourage people who are battling the disease around the globe, Johnson said fundamentally, the organization’s goals have remained the same, and they have been able to adapt their message and connect with members through social media.

World Lupus Day is observed during May, which is Lupus Awareness Month, to increase public understanding of this cruel and mysterious disease. Lupus can affect people of all nationalities, races, ethnicities, genders and ages.

“We have persons of various ages, economic situations. We also have members living throughout The Bahamas as well as Bahamians who are living abroad as part of the group,” said Johnson. “Our primary point of connection is through a very active WhatsApp group and that’s how we stay in tune to our members’ needs. So, on any given day, we have messages coming in from [people] in Harbour Island or Exuma or Abaco, from Canada and the United States (US). We are aware that there are fighters who have been diagnosed who are not very comfortable speaking openly about their diagnosis or who would prefer to simply be educated on lupus and not be active participants in the group, meetings or events and so, we ensure that information, articles or event highlights are shared online, so that they can get the critical information needed to better manage their illness.”

Due to the pandemic, the online platform became even more important to the group, which, like everyone else, had to adapt and move some of their events to a virtual format. With the world returning to a sense of normalcy, Johnson said the organization will resume face-to-face monthly meetings in short order, because the community and connection is important for some of its members.

“We continue to support fighters through our community, through our events and through our outreach. During the pandemic, some of our members experienced issues of job loss, reduced access to care, and fear surrounding an unknown medical issue all while managing a very complex illness like lupus. We were able to provide information through our health talk sessions. And [through] sponsorships, we were able to provide assistance with the purchase of medication and food items.”

From a medical standpoint, Johnson said they have also had the support from local rheumatologists in their group initiatives by Dr. K. Neil Parker and Dr. Anishka Rolle, and Dr. Noelle Rolle, a Bahamian rheumatologist based in the US.

“That connection to the group has been crucial from a public education perspective. Their involvement in media interviews, health talk sessions or our monthly meetings allows the community and our members to have access to professionals in the space in a real way. During the height of the pandemic, they were able to participate in health talks. There were lots of concerns and questions regarding lupus and COVID-19, vaccinations, etc. General public messaging on the vaccine did not drill down into the specifics. In those sessions, persons were able to learn about how specific medications could potentially interact with the medication and learn more about the best time to take the vaccine based on their current medication. We were happy to be able to facilitate that for our members.”

Looking ahead, Johnson said she would like to see the organization form more strategic partnerships locally and internationally in the areas of research and data collection. And that they would also like to push to make medication, testing and management of lupus more affordable for its members.

Lupus 242 was originally the idea of Debbie Humes, but she got sick and was unable to pursue the idea of putting the group together. In 2011-2012, Shanelle Brennen, Johnson’s late sister, who lost her battle with lupus, formalized the group which launched in April 2012 with Brennen as president and Johnson as her vice president and public relations coordinator.

The group was formed with the motto “Breaking the Silence, Supporting the Cure”. It was Brennen’s intent to have regular meetings and to provide education.

Brennen lost her battle with lupus in on March 2, 2017, from the chronic autoimmune disease that can damage any part of the body.

During her life, Brennen had always been focused on growing the awareness surrounding the illness. Johnson refuses to let the disease win the ultimate battle, and continues her sister’s mission to break the silence and support the cure.

She has previously told The Nassau Guardian that her sister’s push came from the fact that while she had tremendous support from her family and friends, she knew that there were others in the community who needed encouragement and resources to fight the cruel illness.

In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria and germs (foreign invaders like the flu). Normally, a person’s immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means the immune system cannot tell the difference between the foreign invaders and the body’s healthy tissues, and creates antibodies that attack and destroy healthy tissue. The autoantibodies cause inflammation, pain and damage in various parts of the body.

Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus – a facial rash that resembles the wings of a butterfly unfolding across both cheeks – occurs in many, but not all, cases of lupus.

Other common signs and symptoms include fatigue; fever; joint pain; stiffness and swelling; skin lesions that appear or worsen with sun exposure; fingers and toes that turn white or blue when exposed to cold or during stressful periods; shortness of breath; chest pain; dry eyes; headaches, confusion and memory loss.

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.

According to mayoclinic.org, no two cases of lupus are exactly alike. And signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes – called flares – when signs and symptoms get worse for a while, then improve or even disappear completely for a time.

Signs and symptoms of lupus that a person experiences depends on which body systems are affected by the disease.

Johnson and Brennen’s late mom, Gwendolyn King, had also been diagnosed with lupus. Johnson has not been diagnosed with the disease.

Every Friday during the month, people can show their support for lupus fighters by putting on purple.

On Saturday, May 28, Lupus 242 will host a virtual health talk session with Dr. Anishka Rolle on the topic of managing lupus.

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Shavaughn Moss

Shavaughn Moss joined The Nassau Guardian as a sports reporter in 1989. She was later promoted to sports editor. Shavaughn covered every major athletic championship from the CARIFTA to Central American and Caribbean Championships through to World Championships and Olympics. Shavaughn was appointed as the Lifestyles Editor a few years later.

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