Rashan Williams had big dreams. She wanted to teach. She dreamt about getting married, and starting a family. She also wanted to make a difference in her community. But the one thing she never dreamed of was a life riddled with pain.
Seven years ago, at age 16, Williams was diagnosed with lupus, a chronic autoimmune disease in which the body's antibodies cannot differentiate between good cells and foreign threats and therefore attack healthy cells within the body.
The most affected parts of the body include the brain, kidneys, joints and skin. But the most defining mark in Lupus is usually the butterfly rash that spreads across the patient's nose.
It started out with unexplained joint pain. The teenager simply assumed she was worn out from schoolwork and just needed to rest.
"I was in grade 10 when the pain began. It was near the end of the school year and since I was a very studious and active student I felt maybe I was pushing myself too much and my body was just telling me that I needed to rest," said a now 24-year-old Williams. "Summer came and I felt better. No pain or problems at all. It was only when school started again that the pain returned. But instead of going away as I went about my day, it got worse over time. At first I was just waking up with an ache in my joints but as the months went by it started to stay with me throughout the day and then even through the night."
The intensity of it made her realize that it was something more than just fatigue. And the pain spread to her shoulders, neck, fingers and feet. It was so painful at times she could barely button her blouses -- and fixing her hair was nearly impossible. As the year ended and the pain got worse despite constantly popping pain killers, her family began to get worried that something was really wrong with her.
Her initial visits to clinics and physicians saw little results. At one point she was told she had rheumatoid arthritis or even growing pains. And although she hoped what was happening to her was as simple as that, Williams knew that the amount of pain she was in could indicate that it was something more.
"I didn't know what to do for a long time. The pain was so intense and pain killers only made it worse. They would help the pain to subside but when they wore off, the pain came back 10-fold. It was excruciating."
She and her mom, Elaine Burrows, sought medical assistance in the United States. During the visit her blood pressure soared, and she was admitted into hospital where she underwent a series of blood tests. In February 2004 she was officially diagnosed with Systemic lupus erythematosus (SLE).
Treatment
Williams initially was given steroids to treat her lupus. Once stable she was sent home. A few weeks after her return, her ankles started to swell and she started gaining weight. Medical officials told her that her kidneys had begun to fail. She was given a chemotherapy drug to reverse the kidney failure, but that failed. She began dialysis treatment. But rather than deal with the double dose of facing the daily struggles with lupus and kidney failure, Williams opted out of traditional dialysis treatment (Continuous Ambulatory Peritoneal Dialysis), which would mean she would have to be hooked up to a machine for three hours, four times a week. Instead she chose Peritoneal dialysis, a treatment she can perform herself three to four times a day with little hassle.
"I like that the dialysis treatment I use isn't disruptive to my life as much as the regular dialysis treatment would be. It's 100 percent better to me and it was easy to deal with when I was working. I just attach my bag of Peritoneal fluid to my stomach and the fluid goes in. After about 15 minutes the fluid comes back out with toxins and other bad chemicals from my body that diffused into the liquid. I do this four times a day. Once in the morning, another time at work when I was working and twice in the evening. I can do this without missing a beat in my life. So although the pain of lupus and my kidney failure are a permanent part of my life they don't have to slow me down."
Williams said the two conditions can be challenging but she tries to not to let it get the best of her. And she is now looking to pursue studies in primary education. And she has a more positive outlook on life in comparison to when she had to adjust to her disease and was depressed all the time.
"The hardest part about having lupus for me was that at the very beginning, it was a very stressful thing to deal with... My mother had three other younger children to deal with, so she had to manage time between me and my healthcare and my smaller siblings. But everything went well because I had support on every front - family, friends and church. Even at school everyone even pitched in, but even though everyone was so good, I couldn't help but be angry when I wasn't able to do things."
Inspiration
Surprisingly for the teenaged Williams, her inspiration to fight and not let lupus get the best of her, came from someone younger (a 13-year-old who also suffered with lupus) and not someone who was older and wiser.
The girl died within six months of her diagnosis. It terrified the then 18-year-old Williams to watch the teenager deteriorate to the point where she could not even speak or move.
"I watched her die and I thought to myself that it could've just as easily have been me. I knew from then that my life had a purpose and I wanted to be an inspiration," she said. "Me having lupus wasn't about me I realized. I knew from then on I had to keep on doing the best I could and inspire others. I can't give up and neither should anyone else."
Even though she's a seven-year-survivor, Williams knows she's not out of the woods, but she is glad that everything is going well and she is feeling better daily. She is not plagued with pain as much anymore. She sometimes can even forget she has lupus until she overworks herself. (When she does that her body gets extremely tired and she can suffer a flare up like joint pain, joint swelling and fatigue).
Who it affects
The illness occurs more commonly in females than in males with a ratio of 11 females to one male, according to Dr. Patrick Whitfield who works out of the Oxford Medical Center. He said the disease affects women in their childbearing years normally in their 20s and 30s. In the United States, statistics show 52 cases per 100,000 are diagnosed with lupus. With this in mind the physician says if the Bahamian population follows a similar trend it is likely that with a population of about 400,000 that over 200 people are diagnosed with the illness.
Like many chronic diseases, lupus sometimes takes a while to be recognized and properly treated according to Dr. Whitfield. He said this is because the symptoms can be mistaken for other illnesses and as a result sometimes people underestimate their problem. He said the constitutional symptoms of lupus include fatigue, fever, joint pain, weight changes, muscular and skeletal pain (joints of the hands, wrists), skin changes, photo sensitivity and hair loss.
"Even though you may have these symptoms, they may very well not be lupus, which is why to be sure you have to get a doctor's diagnosis," he said.
Survival rate
Dr. Whitfield said that although Lupus can seem depressing and is very painful, the mortality rate for this disease is relatively low. There is an 80 percent chance that patients will make it to at least 15 years after diagnosis. Also with regular care and treatment, mortality is also greatly reduced. However, there is a 50 percent chance that people with lupus will suffer from kidney disease, which is difficult and if it leads to kidney failure it can decrease their life expectancy. He also said that reports show that about a third of all lupus patients in the U.S. died below the age of 45, but even so chances were still good for people with the disease to live a relatively normal life if they are on the right medication and are vigilant about their health.
If lupus is left unmanaged people run the risk of developing symptoms that affect the kidneys and lead to failure with each new relapse, said the medical practitioner. Neuro-psychiatric features like seizures, psychosis with hallucination, delirium and meningitis can also occur. Sometimes antibodies can attack the spine so patients can develop a weakness in their lower body making it difficult to walk. Strokes can also happen as well as a cognitive disorder similar to Alzheimer's. Untreated patients or those who are lax in their follow-ups, even with a relapse can eventually get lung and heart diseases like pleurisy or pericarditis respectively which are illness where the linings of the organs are inflamed.
Dr. Whitfield said early treatment can decrease the damage that the disease can cause and allow a person diagnosed with lupus to live a normal life. He said it's a disease that should be taken seriously.
Lupus Awareness Month
On Sunday, May 20, the local lupus support group will also host a Purple Hat Tea Party Affair at St. Matthew's Anglican Parish Hall to raise funds for research.
Lupus Bahamas 242 was officially launched last month with the goal of increasing information and providing for people living with lupus in The Bahamas.
Despite it all, when it comes to dealing with lupus and other chronic illnesses, Williams' advice to young people is not to give up.
"You may be dealing with something that is unfamiliar to you. It's hard no matter how you look at it, but with the right management, proper healthcare, positive attitude and the will to live, you can lead a normal life whether you have lupus or any other chronic disease. And family and friends need to support, encourage and know that any small gesture or words mean a lot. Don't withhold them. They can help the person to see that they can lead a long life and be positive in their outlook. Stay strong. It's not a life sentence. You can make it. You don't have to lay there and die. Encourage yourself and take it one day at a time. With God's help life can still be beautiful."
o For more information on the group and for information on upcoming events, visit the Lupus Bahamas 242 page on Facebook at https://www.facebook.com/pages/Lupus-Bahamas-242-Information-Support/161404860604123 or email lupus-bahamas@hotmail.com.
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