|It’s a family affair|
Guardian Lifestyles Reporter
Published: May 29, 2012
Lupus is an autoimmune disease in which the body’s antibodies cannot differentiate between good cells and foreign threats and as a result attacks healthy cells and organs. It’s a disease that most people usually suffer alone as people simply cannot understand what sufferers are going through. But for the King family it is a mother-daughter affair. Matriarch, Gwendolyn King, 62, is a survivor of more than 40 years and her oldest daughter, Shanelle Brennen is a 20-year survivor. The youngest daughter Shonalee King-Johnson has not been diagnosed with lupus, but she has walked hand-in-hand with her mother and sister as they battled the illness.
A mother’s fight
King was officially diagnosed in 1974, but her fight against the pain associated with lupus began in 1969 after she gave birth to Shanelle.
“I can still remember the pain I felt in the joints in my hands that started suddenly, not long after Shanelle was born. The old folks were telling me that I had gone in the fridge too soon after my delivery and that I had caught a cold. I couldn’t even fold my child’s diaper for a few days due to it,” recalled King.
She eventually noticed rashes on odd parts of her body and began to suffer with fevers. She visited a dermatologist for years to treat the rash which she was sure was the result of an allergic reaction. When she began to have pain in her knees and ankles she acted on a friend’s suggestion that she seek medical attention. After a battery of tests, the then 20-year-old was given two scenarios — she either had rheumatoid arthritis or lupus. While she knew what arthritis was, she couldn’t quite grasp the concept of lupus.
“I still didn’t quite understand what lupus was and there was no ‘Google’ to look it up. I just accepted that until they were sure, that I likely had rheumatoid arthritis.”
But King was shocked into realizing that her illness was far worse than arthritis in January 1974 when she became deathly ill at 22-years-old after giving birth to a still-born baby. She was comatose for three days and hospitalized for four weeks. It was then that she was officially diagnosed with lupus and put on a medical regimen.
Over the years, King had a number of severe episodes, and even experienced a third pregnancy and gave birth to her second daughter, Shonalee, who does not have lupus. In 1988 when Shonalee was about nine, King suffered a life-threatening flare-up as she experienced neuropathy in her legs and her nerves were severely damaged. She said she had no feelings in her legs and had to do physiotherapy. She had to utilize a cane to walk for more than two years. She experienced another long stretch of good health, but suffered her worst flare up earlier this year that damaged one of her lungs. She is now dependent on an oxygen tank to supplement her lowered capacity to take in enough oxygen. King said she now just deals with the challenges that come day to day.
A daughter’s struggle
It was the strength her mother exuded in the face of pain and failing health that gave Shanelle the comfort she needed when she too was diagnosed with the disease. She may have found out she had lupus while in college, but she said for her, the journey started with seeing her mother live and thrive with it.
“I’d seen the ups and downs of the disease with her. I knew what it was and how it worked, so when I was diagnosed at age 19 at a lupus center all alone in Canada I wasn’t afraid. In those times when I was experiencing the excruciating pain, the night sweats and rashes, I felt like I had aged overnight and I knew more than ever what my mother must have been feeling like. But even so I kept remembering how brave my mother was and I knew I could do it too,” said Shanelle.
Her mother’s example is the pillar of strength in her life, but she said it took her almost two years to tell her mother about her diagnosis. She said she simply did not know how to break it to her, especially as she was diagnosed around the time her mother was experiencing her neuropathy, and they suffered a death in their immediate family. Shanelle remembered trying to show her mother the rashes that she had and mentioning the pain she was experiencing as well but she didn’t think her mother was able to cope with it at the time, considering everything that was going on.
Today, Shanelle and her mother share their experiences and find ways to encourage each other through the ups and downs. Witnessing her mother’s attitude through the illness and having children encouraged Shanelle to have a family of her own. Despite the possibility of one day having to see her own children suffer the same fate, Shanelle and her husband Sean are hopeful that their son and daughter, 14-year-old Sean Jr. and nine-year-old Syann respectively, will continue to be healthy. But they are monitoring their health — just in case.
While King’s youngest daughter, Shonalee King-Johnson, 33, does not have the disease she said she has always had an emotional attachment to it because of her mom and sister. And that it’s hard for her to see the two most important women in her life suffer with flare ups and still be happy and upbeat at the end of the day.
Shonalee has learnt to be strong from her mother and sister and feels that if anything like that should be her lot in life she would be as strong as they are. To show her support in a more substantial way she helped her sister create the recently formed Lupus Bahamas 242, a support group that officially launched in April.
“It’s hard to just be on the sidelines, but I try to do what I can for them. Between late last year and early this year both mom and Shanelle experienced horrible episodes that left them hospitalized, [and] it is very emotional to think they both could’ve been lost. I still get upset about it thinking, ‘Why them?’ But I am glad that they are doing well and I hope to be as supportive of them as long as I can. Lupus is a serious thing, but from their examples I know it is something one can live with — especially with support and understanding on all fronts of life which they [mother and sister] have in abundance.”
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 people 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 United States 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
May is recognized globally as Lupus Awareness Month and Lupus Bahamas 242 recently founded by Brennan and supported by her sister King-Johnson has been busy with events like Put on Purple for Lupus (P.O.P.) and the recent Purple Hat Party. To close out the month the support group is planning one final event on Monday, May 28 called “Hope Floats”.
“On that day we hope to get 100 people to release 100 purple ballons at Fort Charlotte in memory of those who have lost the battle to Lupus. We thought it would be a fitting way to pay tribute,” said King-Johnson. “We thought of this because a lot of people have come to us since we started the group who have family members and friends with Lupus, but no one ever talked about it. They want a way to remember their lost loved ones, especially if it can be in a group of people who would understand what they went through. So this finale is a really special event for us.”
King-Johnson said the group intends to go back to regularly scheduled meetings at St. Matthew’s Parish Hall every third Thursday at 6:30 p.m. The support group hopes to have each meeting be more than about support. It will be a learning session as well. In a previous session a pharmacist spoke to members about the new drugs out there for lupus and how they interact with each other and the body. King-Johnson hopes to be able to invite other professionals like a nutritionist and an obstetrician/gynecologist to speak to the group to discuss things that people in the group worry about.
King-Johnson hopes that in having an official support group, people will be more open about the illness and realize like she has that it is not a death sentence and there is always hope where there is life.
• 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 firstname.lastname@example.org.