Most days Beth Darville wakes up in pain, then struggles through her daily routine in pain before taking to her bed at the end of the day -- still in pain. It's a day that's incomprehensible to most people, but there is a segment of society that understands Darville's pain. They are all Lupus suffers.
Lupus is a chronic inflammatory disease. It occurs because white blood cells attack the body because they cannot differentiate between healthy cells and dangerous ones. The most affected parts of the body include the brain, kidney, joints and skin. But the most defining mark in Lupus is usually the butterfly rash that spreads across the patient's nose.
According to general practitioner, Dr. Patrick Whitfield who works out of the Oxford Medical Center, the illness occurs more commonly in females than in males with a ratio of 11 females to one male. 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 physicians 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.
Forty-five-year-old Darville's life has been a rollercoaster of discomfort and debilitating aches since she was diagnosed 15 years ago with the autoimmune disease.
Her painful journey began when she started having unexplained ulcers in her legs often accompanied by excruciating joint pain. She visited doctors on many occasions but was told there was nothing wrong with her and she was a hypochondriac (a person preoccupied with the idea of being medically ill). Despite this she had an underlying feeling that something was not right.
"Even before I was diagnosed with Lupus I knew something was not right. My doctor kept telling me I was over-worrying myself with something that didn't even exist but I knew that I was not wrong. What worried me even more was that my symptoms were similar to those of my older sister, Shirl, who had been diagnosed with Lupus 15 years prior to when I thought I was experiencing the same thing. But it was only when I had my daughter, Lyette Darville, and I visited another doctor that I was finally taken seriously and eventually through numerous tests I was diagnosed with Discoid lupus erythematosus."
Diagnosis
The diagnosis terrified her even though she was happy to be able to put a label on what was going on with her. She had watched her sister battle the disease for years and even knock at death's door on numerous occasions. Darville could not imagine having to go through the pain and suffering she watched her sister endure. She dealt with her diagnosis by avoiding the medication hoping the illness would go away. But after a number of hospitalizations -- one due to her bladder muscles collapsing, made her realize that she had to take the illness seriously and not play Russian Roulette with her life.
"It is hard to come to terms with this illness but through seeing my sister fight so hard and successfully with this illness I knew I could do it. She is my hero personally and I realize more than ever that there are so many people who are worse off than I am and they still fight it and can smile. But even though I am now on my medications properly and I am fighting to be in the best health possible everything does not go well. Emotionally this illness is unpredictable. One moment I can feel great and happy and then the next I feel terrible and cranky. It's hard, but it's something you can't shy away from."
Besides the arthritic pain and swelling like many other patients with Lupus, Darville also suffers from Raynaud's Syndrome, which means that smaller arteries that supply blood to the skin narrow, limiting blood circulation to affected areass. (The condition causes some areas of the body, such as fingers, toes, the tip of the nose and ears to feel numb and cool in response to cold temperatures or stress). To combat this she always takes with her a tam, scarf and gloves. And is aware of how ridiculous she may look with them on in the middle of summer.
Since she accepted her disease she said she has learned to get accustomed to the changes that occur within her body and how to manage her drastic personality changes. But she admits it's not easy. Her daughter sometimes refers to her as the "Incredible Hulk". She said even her co-workers know when she is down and playfully refer to her altered personality as "Beth Ann". But even through her crankiest moments Darville said it is through their support of her on her good and bad days that she has been able to cope as well as she has throughout the years.
"When you have Lupus it's hard to keep a job because of the pain and anxiety you can feel. But I have been able to work through it thankfully because of the support of my boss and co-workers at IBM. Days when I am really down, particularly in the rainy or cold weather I am allowed to work from home. Even days when I am down but I still manage to go in to work, my co-workers, Tiana, Abigail, Inae and Marie always find a way to make me smile and laugh. They have been among the most supportive in this entire ordeal."
Appreciate life
Since taking her disease seriously, she has started a journal to chronicle her daily experiences and to properly monitor her stress levels which is important because her illness thrives on stress and she can experience flare ups when she is too tired.
"At the end of the day although Lupus has given me pain and discomfort it has taught me to appreciate life, value good friends and shown me that family is not always blood relatives, but people who treat you as such. It has taught me to forgive and let go [because] with this kind of illness you can't carry around things like hate or anger because it causes more stress within the body which can literally make me sick. I have also become stronger in my faith and I have learned to give a lot in time and talent."
It has been 15 years since her diagnosis, but Darville finds difficult the fact that many of her family members still don't understand fully what she goes through. And at this stage in her life she said she does not always try to explain it anymore. She has come to realize that some people will never understand just how painful the illness can be from moment to moment.
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 diseases 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.
Because of her experience Darville advises people with Lupus to find support groups that suit their needs. She used to be a part of Lupus Foundation of America but found it was too depressing. She also was a part of "Life with Lupus" support group which she finds is far more supportive and uplifting. But the first local support group that she is a part of "242 Lupus Bahamas Support Group" is one she is pleased with. She is able to share her experiences and uplift new people diagnosed with the illness.
World Lupus Day
As May is Lupus Awareness Month, World Lupus Day will be celebrated on Thursday, May 10. The local support group is asking the Bahamian public to P.O.P. (Put On Purple) for Lupus to raise awareness of the illness.
"Putting on purple is a simple way to show support for this cause,"said Shonalee Johnson, vice-president and public relations officer of Lupus Bahamas 242. "Whether it's a tie, a blouse or even purple shoes, we want to appeal to the general public, corporate Bahamas and schools to participate in this exercise. This is a global exercise and we want to do our part locally to stop and recognize the impact that Lupus has on lives here in The Bahamas."
On Sunday, May 20, the 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.
oFor 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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