When lupus strikes
Guardian Lifestyles Editor
Published: May 14, 2013
Prior to 1999, Renee Dean had never even heard of the word lupus — she did not even know that there was such a disease. So the day she visited the doctor because she was feeling under the weather, she thought she was suffering with the flu. That doctor prescribed medication that did not seem to improve her situation. Finally, frustrated with the fine bumps on her back that kept itching and from which she could get no relief, she went to see a skin doctor. After a battery of blood tests, she was told she had lupus. It was the first time Dean had ever heard the word and found out that it was a disease.
Lupus is a chronic inflammatory disease that occurs when the body’s immune system attacks its own tissues and organs. It can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus is the facial rash that resembles the wings of a butterfly unfolding across both cheeks. 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.
Shortly after Dean’s diagnosis in early 2000, she was hospitalized for the first time for approximately nine days. To this day she says she can’t recall exactly what happened. She says she only knows what people have told her, and that it has not been good at all.
“It was like I was out of my mind or something, so I think they had me heavily sedated,” said Dean.
The last time she was hospitalized for a flare-up was in 2008 as she suffered with severe leg pain.
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly. They 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.
Dean says she is currently in remission. She has not had a flare since her 2008 episode.
The one downside to her lupus diagnosis was that she was told not to get pregnant because of the risk — she could either lose her life or her child. Dean does not have any children. With the world recently celebrating Mother’s Day, being childless is something she says she has accepted. And she says having lupus isn’t the only reason she is not a mother.
“I’ve always said I don’t want to have children unless I’m married … and I’m not married, so it doesn’t affect me a whole lot — not now,” said the 42-year-old.
Signs and symptoms of lupus depend on the body symptoms affected by the disease. Symptoms include fatigue and fever; joint pain, stiffness and swelling; butterfly-shaped rash on the face that covers the cheeks and bridge of the nose; skin lesions that appear or worsen with sun exposure; fingers and toes that run white or blue when exposed to cold or during stressful periods; shortness of breath; chest pain; dry eyes; headaches; confusion or memory loss.
“The flare-ups happen whenever they happen,” she said. “You can look at someone today and say nothing’s wrong with them and the next day you can see them totally different [and] in a lot of pain.”
Dean who is naturally slim and who normally tips the scale at around 135 pounds said she lost weight during her flare. The needle on the scale dipped below 100 pounds.
“For me to wear my clothes I would have to wear like four pants to keep the main pants up,” she said.
For the past 14 years, Dean has been taking five different medications — some she takes once a day, others she takes twice daily in her fight against the disease. While she’s comes to terms with lupus, the one thing she says she’s certain of, it’s that she is sick and tired of taking all the medication that she does.
“It’s tiresome,” she said. “Some days if I miss when I’m supposed to take it (medication) I don’t worry about it, I take it the next day.”
As she looks to her future her hope is that one day a cure is found or that one day she goes to the doctor and is told that her lupus is “all gone”.
And Dean says it’s her trust in God that has helped bring her through the last 13 years living with lupus.
“Even when they told me [I had lupus] I was calm straight through because I said I can’t change the situation there’s nothing I could do about it, so I just accepted it and trust and believe in God. I have had great support from family and coworkers and that too has helped me,” she said.
During the month of May Bahamians will join millions around the world to raise awareness for lupus. Nassau-based support group, Lupus 242, is leading the way with events planned to educate locals about the debilitating disease affecting many people living in The Bahamas.
An estimated 5.5 million persons globally live with the chronic autoimmune disease brought on by genetics, environment and hormonal imbalances in the body. There are no real statistics on the number of persons in The Bahamas with lupus. In addition to raising awareness, Lupus 242 is working to establish a local database of lupus patients.
“May is Lupus Awareness Month and we are appealing to the general public and to corporate Bahamas to support our events and activities,” said Shanelle Brennen, Lupus 242 president and a lupus fighter for more than 20 years. “It’s amazing the amount of Bahamians who are suffering in silence. We want to provide them with much needed support through events and through our monthly meetings. Lupus is not an easy illness to live with, but there is hope,” she said.
Since Lupus 242 launched in April 2012, persons throughout The Bahamas have reached out to share their stories on how lupus has impacted their lives. In addition to the events, the group is also releasing a public service announcement entitled “But You Don’t Look Sick” and will be selling wristbands and bumper stickers to the general public.
Dean is appreciative of the Lupus 242 group — a group that she says has interesting and informative meetings.
“The have different health persons come in and talk to us. And just to know different people that have lupus is good. Since I’ve been with Lupus 242 I haven’t been sick, but it’s a good support,” said Dean.
LUPUS 242 CALENDAR OF EVENTS
Monday, May 20
9:30 a.m. – Hope Floats Balloon Release ceremony in honor of lives lost to lupus at the top of Fort Charlotte.
Sunday, May 26
3 p.m. – A Purple Hat Tea Party Affair at St. Matthew’s Parish Hall.