Shonalee Johnson does not have lupus. Her late mom Gwendolyn King and her sister Shanelle Brennen did – and have both lost their battle with lupus. So, Johnson has first-hand knowledge of this cruel and mysterious disease. She has seen it and lived it.
When her sister decided to organize Lupus 242, which had as its 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 battling similar issues and facing similar health challenges, Johnson supported her sister serving as the group's vice president and public relations coordinator.
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.
Brennen launched Lupus 242 in April 2012 with the assistance of Johnson.
Five years later, on March 2, 2017, Brennen lost her battle with the chronic autoimmune disease.
Johnson's sister may no longer be alive, but she refuses to throw in the towel on the organization.
"It's just this fight I see in our members to keep going. Even after losses and physical setbacks, they keep pushing. Their life doesn't stop because of lupus. Even in pain, they work and travel and accomplish goals. So, if they can push and show up and do life while managing something like lupus, then I can absolutely show up for them," said Johnson.
And she shows up.
Lupus 242's motto is "Breaking the Silence, Supporting the Cure". It was Brennen's intent to have regular meetings and provide education.
Johnson said her sister's drive came from the fact that while she knew she had support from her family and friends, there were other people in the community who needed encouragement and resources to fight the cruel illness.
"It's important for me because I know that there is impact in all that we try to do. There is much to be done and the work is continuous. People are being diagnosed every day and they need information and support. Being involved in a cause like this helps me to keep so many things about life into perspective."
During her life, Brennen had 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 said they continue to do the work because a great need remains.
"From what has been shared over the years, being diagnosed with lupus can be one of the most frightening and isolating experience for patients. Many don't have a reference point for the illness or family history - so, to be able to join a group where other members can relate to your experiences and where you can learn more about managing a very complex illness is important."
World Lupus Day, on Wednesday, May 10, is observed during Lupus Awareness Month to increase public understanding of this cruel and mysterious disease.
In April, Lupus 242 held its first in-person meeting since March 2019. The group members, like everyone else, had taken to the virtual platform during COVID.
Johnson said the meeting was "amazing!"
"Honestly, the pandemic was hard on our group. It was so good for morale and just to connect in person after so long. We chat all of the time in our WhatsApp group – but nothing beats in-person – especially for persons who joined during the lockdowns; it was good to put faces to names that just pop up in a chat."
Who lupus affects
Lupus can affect people of all nationalities, races, ethnicities, genders and ages.
In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria and germs. Normally, a person's immune system produces proteins called antibodies that protect the body from the 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.
During its awareness month, Lupus 242 will engage in a series of events, starting with its annual church service at Church of God of Prophecy, on Augusta Street, at 11 a.m., on Sunday, May 7, ahead of World Lupus Day on Wednesday, May 10, for which people are encouraged to wear purple (P.O.P.) for lupus awareness.
A run/walk will be held on Friday, May 12, beginning at Goodman's Bay, followed by an Art Brunch/Paint N' Sip fundraiser on Sunday, May 21, at 6 p.m., and a lupus health talk with Dr. Anishka Rolle and Dr. K. Neil Parker at the Harry C. Moore Library at University of The Bahamas on Saturday, May 27, between 12 noon and 2 p.m.
Every Friday during the month, the public is encouraged to wear purple in support of lupus awareness. Lupus 242 has shirts, bumper stickers and wrist bands for people wanting to support the cause. They can be ordered by WhatsApp at 242-424-4279.
LUPUS 242 EVENTS
Sunday, May 7
11 a.m. – Annual Church Service at Church of God of Prophecy, on Augusta Street
Wednesday, May 10
P.O.P. - Put On Purple for lupus awareness
Friday, May 12
6 p.m. - POP-Up Fun, Run/Walk at Goodman's Bay
Sunday, May 21
11 a.m. - 4 p.m. – Art Brunch/Paint N' Sip fundraiser
Saturday, May 27
12 noon - 2 p.m. – Lupus health talk with Dr. Anishka Rolle and Dr. K. Neil Parker at the Harry C. Moore Library at University of The Bahamas
P.O.P. for Lupus Fridays - May 5, 12, 19 and 26
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