During the month of May, many seek to raise awareness about lupus in The Bahamas and worldwide. Among those showing their support is the Bahamas Electrical Corporation’s (BEC) Abaco staff in support of Michelle Thurston, one of their planning assistants.
According to Toni Seymour, BEC’s Abaco manager, this is the third year they have shown their support by wearing lupus T-shirts, caps and an assortment of purple paraphernalia; however, the BEC staff offers daily encouragement and assists Michelle whenever the need arises.
Michelle, 29, was diagnosed with lupus two years ago by her rheumatologist when she came down with pneumonia, and wouldn’t get better.
The condition has drastically changed her life.
Records show that an estimated 5.5 million persons globally live with the chronic autoimmune disease brought on by genetics, environment and hormonal imbalances in the body.
“It’s when your immune system no longer recognizes you as a part of it, and instead of fighting off infections and disease, it starts to attack normal, healthy tissues,” Michelle explained. “So it will attack your kidneys, your lungs, your heart, your joints, your skin and so forth.”
Common symptoms include debilitating pain, fatigue and unexplained flare-ups impacting random parts of the body especially internal organs – symptoms that Michelle is all too familiar with. When her flare-ups occur, Michelle experiences muscle fatigue, and flu-like symptoms that causes a high fever.
“It isn’t like there’s a disease in you; it’s your own body fighting you,” she said.
The flare-ups require doctor’s visits, where she begins steroid treatments and has to be hooked up to a drip to get better. Besides steroid treatments, Michelle has to take four medications and four supplements. The main treatment for lupus is immune-suppressors to give the body the chance to rebuild.
Additionally, she has to take a liver and kidney test monthly, and every six months she has to see an eye doctor to ensure that platelets are not building up in her eyes.
The flare-ups lead to bloating and swelling of the joints not to mention lack of sleep.
“A lot of things I used to love to do, I can’t do because my lupus – it attacks my muscles,” she reflected. “It’s not the same for every person; it deals with each person differently.
“A lot of things I used to like to do like long walks, swimming, dancing, I can’t do them anymore because my muscles are really weak and not as strong as they used to be.”
Frequently, her veins have collapsed on doctor’s visits, but she is fortunate that her liver and kidneys are still in good shape because lupus takes a serious toll on the body’s organs.
“It’s like we are the walking dead; we’re dying inside, and we don’t know,” she said matter-of-factly.
One day, Michelle went home to rest because she was not feeling well. It was a good thing that her co-worker Roger Delancy stopped by to check on her. Her kidneys and heart had begun to fail with her blood pressure dropping, but thankfully she arrived at the doctor’s office in the nick of time.
Michelle is known to be very independent, and help has to be forced on her.
“She understands the condition and she knows the nature of it, but she still hasn’t gotten use to the idea of people being there for her and helping her and supporting her,” Seymour said. “So what we did today, we came together as a group to show our unified support and to let her know that no matter what we stand behind her.”
So with the help of family, friends and co-workers, Michelle enjoys some good days particularly when she has some coconut water to go along with it. Since her diagnosis, she has learned that there are a lot of people in Abaco with lupus who don’t say anything because there is a stigma attached to it.
“When you tell them that you have lupus, the first thing they say is, ‘Oh you’re going to die.’” There is never anything good [said].”
While there are no concrete statistics on the number of Bahamians with lupus, the Nassau-based support group, Lupus 242, is geared toward establishing a local database of lupus patients in addition to raising awareness. Their activities include a balloon release, tea party and church service.
Her parting words as she appealed to Bahamians to support the Lupus Bahamas 242 community: “Don’t give up. Lupus is a tough disease, but you’re stronger. You’re stronger than lupus and you gotta fight.
“Be a warrior.”