With the widespread attention given to some diseases almost everyone, no matter their age knows that they are diseases of some sort. But when Alisha Woodside recently wore a band with the words Cure for Lupus, she got the strangest reaction from friends. They wanted to know who lupus was. The other day she asked another group of friends whether they would like to join her at a tea party for lupus. Their response was "For who?" She used the opportunity to speak to her friends about the autoimmune disease.
At 15, Alisha is doing what she can to educate her peers and bring awareness to the chronic inflammatory disease that occurs when the body's immune system attacks its own tissues and organs. It's a disease that 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.
Alisha is the youngest member of the group Lupus 242 with the disease. She was diagnosed at age 11.
Before her diagnosis her mother, Allison Woodside said her daughter used to always complain about joint pains and always had unexplained bruises on her body.
Alisha fell victim to the difficulty in diagnosing the disease. Early on she was diagnosed with sickle cell. Her parents (Allison and her dad Etwood Woodside) persisted in trying to get help for their daughter and took her to another doctor who upon learning that their was a history of lupus in Alisha's paternal lineage (her father's aunt had lupus), tested her for lupus. But by the time the parents got their daughter to that doctor, Allison says the pains were so severe, Alisha could not walk or talk and was in a wheelchair. The doctor diagnosed Alisha with lupus.
Will my child survive?
"When the doctor confirmed that it was lupus, one of the questions I had for them was: Was she going to die? She looked that bad," said Woodside. "And I didn't know much about lupus ... actually, the only things I'd heard about lupus was when talking to people they would say I had a friend with lupus and they died -- so that was one of my main fears. The only thing going through my mind was: Was she going to live? And if she was going to live, was she going to be a normal child?"
At the diagnosis, Alisha's parent sought help at a specialty clinic in the United States. Today, Woodside says her daughter is much better, and gets the occasional flare. Her last flare was a year ago.
Woodside said her daughter's medication pretty much keeps the disease under control. Alisha downs seven medications daily most of which have to be taken two to three times a day. Taking the medication is something the teenager says she hates doing, but knows she has to in order to control the disease.
And 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.
Before she was diagnosed, her mother was really scared for her
daughter. Now she says she knows Alisha can live a normal life, but will always have to be on medication.
"We hope that in time, the medications will be reduced and it will go into remission of some sort," she said. But she said her daughter is the normal teen who is quite active -- Alisha plays both basketball and volleyball. Her mother says they try to ensure that Alisha, a tenth grade student at Queen's College, gets a lot of rest, and stays out of the sun at the hottest periods of the day.
While Alisha may have lupus she says she does not let it get her down and prefers to look at the bright side of things.
"I'm actually happy I have lupus, because it shows that having a disease does not stop you from living a normal life, because I see other people with diseases just sit down to themselves, but I ignore that. I don't even think I have a disease. It's just a condition."
Over the years she's had to miss school from time-to-time, the longest was for a three-month period during her sixth grade year when she was diagnosed and was taken to the United States to the doctor. Kids being kids it didn't phase her peers at all, they just welcomed her back into the fold with a fruit basket. She said it wasn't until her ninth grade year that people really started to question her about why she always had to go to the hospital and about the disease.
Normal teenager
Just like a normal teenager, she has her outfit already squared away for the Purple Hat Tea Party Affair at St. Matthew's Parish Hall on Sunday, May 26 and wanted to keep it under wraps so that she could surprise everyone at the event.
And her one wish is that a cure for lupus is found. Alisha is part of a study in the United States for a cure. In the meantime she says she's doing her part to raise awareness about the disease.
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.
"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."
Since Lupus 242 launched in April 2012, person throughout the country have shared 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.

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