The Nassau Guardian
Her titles held were numerous — business woman, wife, mother, sister and friend but Deirdre Bain never thought she’d add lupus patient to the long list of titles that defined her. The 47-year-old mother of four remembers how the chronic autoimmune disease just snuck up on her like an unwanted visitor who kept trying to get her attention but she kept ignoring it until she had no choice.
Bain was diagnosed with the disease in May 2010, but it had been more than a year earlier when her symptoms presented themselves. She noticed her face swelling and rashes on her ankles. She went to a dermatologist seeking relief, but the rashes kept returning. Eventually by September, the rashes that were purplish in color had started to pop out on her face as well. and the joint pains compounded the problem. She attributed it all to aging.
“I never thought my problem was anything too serious. I was convinced that something was irritating my skin so I thought maybe it was my little house dog so we put it in the garage but the rashes still came. then I thought it could be my detergent and we changed from using powder to liquid and I would rinse the clothes twice as an added measure. But I still broke out and the rashes got progressively worse.”
Bain realized something was increasingly wrong when her symptoms upon returning would be worse. Her rashes had gone from purplish to being dark patches on the tips of her ears, on her arms and upper back.
It only occurred to Bain that something may be medically wrong with her when a sibling who had been diagnosed with lupus 11 years prior questioned her strange appearance.
Lupus occurs as a result of white blood cells attacking important organs and cells in the body due to not being able to differentiate between healthy and harmful cells. She was diagnosed as photosensitive which means she has to avoid being outdoors between 10 a.m. and 4 p.m. when the sun’s rays are at their strongest. She has had to curtail attending her children’s sporting activities.
Upon hearing her diagnosis, Bain’s first thought was that her life was over. She was nervous, afraid, depressed and worried. She felt she had been given a death sentence. The fact that she could get a second opinion she said helped her cope. After doing a battery of tests she was officially diagnosed with lupus.
Since her diagnosis and prescribed medical treatment Bain’s skin eruptions are more controlled and her internal organ inflammations are also being managed. She said her joint pain is minimized, she no longer has shortness of breath and now knows the importance of putting herself first.
Because of her experience with lupus, Bain said one of the biggest lessons she’s learnt is that it is sometimes important as a person to care about yourself more than other things or people.
“I love my family dearly. I have done all I can to put them first and ensure they do well, but it’s doing that and not making time for myself and my health that could’ve cost me my life. I remember before I forced myself to see a doctor I didn’t want to leave them for a moment. But I saw that I had to do it and had I not done so I don’t know what would have happened. I may not have been there for them at all. my health may have deteriorated or worse. so I learnt that I need to put myself on the front burner sometimes. your health is a gift to you and yours. you are no good to them unhealthy or gone. so you have to take care of yourself. that is what I learnt the hard way.”
She now is on top of her health and ensuring that she is there for her children for years to come.
What is lupus?
Lupus is an autoimmune disease in which the body’s white blood cells cannot differentiate between healthy and foreign cells and as a result attacks important 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.
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.
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 illnesses 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.
Due to her own life changing experience, Bain has founded a non-profit lupus group called “Lupus ME? Bahamas”. She said the goal is to bring awareness to the public about lupus. The group is not a support group as much as it is about informing the public about the illness and raising funds to help lupus patients said Bain.
Lupus ME? Bahamas (which is not affiliated with Lupus Bahamas 242) will stage a walk-a-thon on Saturday, May 26 starting at 6 a.m. from Grace and Peace Wesleyan Church in Winton themed “Walk the Loop” to encourage lupus patients, supporters and exercise enthusiasts to come out and have a good time while learning about this autoimmune disease.
“My goal is to get people to be proactive about this thing,” said Bain. “I wasn’t aggressive in finding out about this illness when I was diagnosed and this can be a big deal for others whose illness can be worse. I want people to be aware of it and be understanding. I hope to be able to raise funds through different fundraising events to help support lupus patients who are in need of assistance to cover things like medical treatment. It’s a simple thing but it makes a difference and I hope to see this grow in years to come.”
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