A beautiful ‘butterfly’
When Jeanè Swann was diagnosed with lupus at age 28 she withdrew into herself and as she put it, she stayed in her little corner. But then she came to the realization that her mom Merlene Seymour-Adderley lived with the disease for 17 years, and did so maintaining high spirits. That made her realize she could no longer live in that haze and funk.
“I said lupus is going to live with me. I’m not going to live with lupus. So, one day I got up and said lupus move aside – Jeanè is going to take the forefront in this disease, and from then to now, there’s not a day that I get up and say I have lupus. Nobody can look at me and say ‘oh, she’s sick’. I don’t live like that. My coworkers are always on my back saying I can’t do this, or I’m not supposed to do that, and I’m like why not?”
To look at Swann who is now 44 years old, you don’t visibly see any signs of the disease, and she’s totally recovered from a stroke due to lupus three years after her diagnosis that left her completely immobile on her left side. Swann had to learn to walk again, and to learn to write with her right hand; she had been left-handed.
Prior to her diagnosis, Swann had sought medical care for chronic pain in her joints and general tiredness all the time. Knowing her mom’s history with lupus, the doctor tested her for lupus, but it did not initially show; Swann was given precautionary medication while the doctor continued to monitor her, until a blood test actually confirmed she had lupus.
“When it finally showed up in 2002, I never saw a doctor as happy to tell someone they had lupus in their life,” she said. Prior to the official diagnosis he had no explanation for Swann’s pain and tiredness.
Her initial doctor then referred her to a rheumatologist who started treating her for lupus, which they thought they had under control. But in 2005 Swann suffered the stroke from the lupus that left her left side immobile. She was put on a blood thinner and an aspirin regimen for a period of six months and prednisone for the lupus.
Since 2006 she’s been in remission and says her average day is normal, but her diagnosis and eventual stroke and successful recovery has cemented for her to give thanks through all things.
“Thank you for seeing a new day – light, rain, sleet, snow – just be thankful that you’re up and alive and going.”
In lupus, something goes wrong with a person’s 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 a person’s 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.
Millions of people worldwide struggle with the often debilitating health consequences of lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys and brain.
During May, which is recognized as Lupus Awareness Month, there is a concerted effort worldwide to raise awareness and funds for lupus research, and the impact of the disease on the lives of individuals and families.
In The Bahamas, support group Lupus 242 seeks to increase public understanding of the cruel and mysterious disease that ravages different parts of the body.
Swann, who has had lupus for 16 years, is a member Lupus 242 which she said has been helpful to her through her diagnosis.
“They’re so helpful in referring me to doctors, new medication, new treatment … just being a support system – a group that you can talk to about anything – as simple as my finger is hurting, they’re there to carry you through.”
Lupus 242 was originally the idea of Debbie Humes, but she got very sick and was unable to pursue the idea of putting the group together. In 2011-2012, the late Shanelle Brennen, who lost her more than two decades battle with lupus on March 2, 2017 had a rough bout with the disease that put her out of work for almost six months. During that time, she decided to get the group up and running. They launched in April 2012 with Brennen as president and her sister Shonalee King Johnson as her vice president and public relations coordinator.
“She wanted to get the message out there and the main thing for her was that she knew she had a lot of family support, but she did not want anybody to feel that if they did not have that family support that they were alone,” said King Johnson in an earlier interview with The Nassau Guardian. “She felt that a lot of people suffered in silence, and came up with the theme ‘Breaking the Silence, Supporting the Cure’ which is our motto. She wanted a way for us to have regular meetings and to provide education. She wanted it to be where someone who was on the other side of an experience could speak to it.”
King Johnson who was never diagnosed with the disease now carries on her sister’s fight.
She said Lupus 242 members determine how they want to best interact and engage with the group. She said some are very active in their WhatsApp group and find it comforting to receive a daily inspiration, or a place where they can speak to experiences they’re having and find out whether anyone else has had their experience, or to speak to a new technique they have tried and to find out if anyone else has tried it.
The organization also has a Facebook presence so that members who aren’t physically able to make it out to the once-a-month meetings can stay connected. The group meetings are meant to be light, fun, and informative. King Johnson describes them as an outlet.
“We’re laughing and talking … you would never know that we’re talking about something very serious. Sometimes we would have doctors come in, we would have nutritionists, we have pharmacists come in – anyone that can speak to the illness,” said King Johnson.
Swann is a cousin of the late president, Brennen, whose mother Gwendolyn King also had lupus.
After her diagnosis, Swann said they have realized that the disease is genetic in their family
“I’m not only related to her [Brennen] on her mom’s side, but I’m also related to her on her dad’s side. Finding that out, we found that we had an aunt years ago, who doctors, going back through her records, now actually realize died from lupus and not the disease they thought she did have. And not only that, my mom had it, my grandaunt, and her daughter who is still alive, they also have it.”
Even though May is recognized as Lupus Awareness Month, beyond these 31 days, Swann said she hopes people take from it the fact that they can’t just look at someone from the outside and assume everything is well, or look at someone when they’re down and out, and just sit back, and not take a moment out of their day to ask that person how they’re feeling, what their day is like, or inquire about what they’re going through.
“Bear with us,” Swann implored.
During Lupus Awareness Month, a number of activities are usually on the calendar, and this year is no different, coming off recent World Lupus Day celebrations on Friday, May 10, the group will host a Hope Floats Memory Ceremony/Ribbon Formation will take place on Saturday, May 25 at Fort Charlotte at 6 p.m; P.O.P (put on purple) for Lupus takes place every Friday during the month, and people are encouraged to wear purple to show their support.