Lupus Survival Story

by Tonya Dixon | July 11th, 2013
LaShawn Millner, Zjya Westbrook, Keva Brooks Napper & Jenelle Strickland

(l to r) LaShawn Millner, Zjya Westbrook, Keva Brooks & Jenelle Strickland (Photo by Still Shots Photography)

More than 1.5 million Americans live with lupus; 5 million worldwide. Ninety percent of people diagnosed with lupus are women. Of that percentage, women of color are two to three times more likely to be affected. Lupus is an auto immune disease. It can affect and damage nearly any part of the body, especially the skin, joints, blood and kidneys. With lupus, the body’s own immune system is actually attacking itself. The disease confuses the body’s normal, disease-fighting antibodies into thinking the good antibodies are foreign invaders and creates other antibodies that actually attack and destroy healthy ones which in turn causes pain and damage throughout the body.

Lupus comes in four major forms. Systemic Lupus is the most common form and is not limited to affecting a certain area of the body. Cutaneous Lupus is limited to the skin. Drug-induced Lupus is a lupus-like disease caused by certain prescription drugs and usually disappears after medication is stopped. Neonatal Lupus is rare and affects infants born to women having lupus; however symptoms usually disappear after several months with no lasting effects. It is important to note no two cases of lupus are identical and symptoms vary from person to person. Symptoms may include (but are not limited to) extreme fatigue and tiredness, headaches, painful or swollen joints, fever, anemia (low numbers of red blood cells or hemoglobin, or low total blood volume), swelling (edema) in extremeties and/or around eyes, pain in chest on deep breathing (pleurisy), butterfly-shaped rash across cheeks and nose sun- or light-sensitivity (photosensitivity), hair loss, abnormal blood clotting, fingers turning white and/or blue when cold (Raynaud’s phenomenon), and mouth or nose ulcers.

Lupus is a manageable disease, but awareness is extremely low, especially within the African American community even though African Americans are astronomically, disproportionately affected by the disease. The following individuals are not only living with Lupus, but are thriving and overcoming the many obstacles they face from the disease on a daily basis. Jenelle Strickland, better known as, The Princess of Poetry, is a performance poet. She produces the longest running poetry show in the triad area—Late Night Lyrics, is a published poet, the reigning National Most Influential Poet of the Year, a mother of four, a human resources professional, founder of The Princess of Poetry Entertainment Group, a burgeoning graphic artist and she has Systemic Lupus. She is much more than her illness.

Strickland began having sudden and seemingly unrelated health problems. It all began with her blood pressure rising to stroke level for no apparent reason. She developed acute asthma, having never experienced any major respiratory problems before; her joints began to hurt and her body began to swell. At the same time she began to experience overwhelming exhaustion to the point of lethargy. She even noticed she was becoming more and more forgetful. There was unexplained weight gain and swelling in her lungs. At 43 years old, she started thinking she was simply getting old and her body was letting her know it. Even her doctors were stumped. They all attempted to diagnose her individual symptoms instead of viewing them all as symptoms of one illness. Finally, after becoming fed up with constant sickness and pain she suggested her doctor consider testing her for lupus. After two years of battling mysterious illnesses and bouts with various sickness, Strickland was diagnosed with lupus in September 2012. Her diagnosis provided a concrete answer to all the mystery surrounding her problems, but it didn’t knock her off balance or her course.

“The doctor asked me was I upset, I said no,” she said. “He asked me, why not? I said I’m a three times cancer survivor. If this is the next thing I’ve already been through the worst part of my life. I almost died of cancer in 2009. I said this can’t be worse than or as bad as that.”

The strength and optimism that she displays is real and genuine and mind boggling. Her determination not to allow lupus to overtake her life is admirable and encouraging. Strickland’s upbeat personality belies the many issues she faces on a regular basis, but it’s all by design. “Truthfully, it’s not easy to live with lupus because you can never tell when a flare up is coming. Lupus is a disease where a flare can come at any time for any reason and it can last any period of time. Symptoms come and go. It’s very unpredictable. You have ups and downs. There is an emotional roller coaster, but you have to encourage yourself. Regardless of what happens, I’m going to use every moment to live and do something productive and positive in my life. So when they told me I had lupus I said well lupus should just get ready to get in line with everything else that’s going on in my life, because I have a schedule to keep and things to do.”

Keep moving to keep moving. It’s something Strickland lives by every day; literally and figuratively. She has taken her love for poetry and performance and uses it as a platform to educate the community about lupus. Gracefully, she incorporates information and entertainment. Every fourth Friday night of each month at A Taste of Soul she produces Late Night Lyrics where she along with other artists perform original work produced through her own company. It’s just another subtle reminder that life still goes on even in the midst of unfavorable situations and circumstances.

Strickland is also an active member of the Purple Prayers, a faith-based foundation for lupus survivors and supporters. The group stands on the premise that lupus is a diagnosis, not a lifestyle. “I believe God for total and complete healing,” she says. “This is only temporary, but while I’m in it I’m trying my best to utilize it for something positive.”

Keva Brooks Napper has been dealing with lupus for over 10 years. She was diagnosed in 2003 and came frighteningly close to death in 2004 after having several grand mal seizures in one day, and discovering blood clots on her brain which caused her to have a stroke. She miraculously walked away from the hospital after only two weeks with no outward signs of hurt or harm and no need for rehabilitation. The entire life-altering episode was an effect of the lupus in her body.

Everything about Napper’s form of lupus was considered rare. Even her doctors said she was a mess. Having come close to death and surprising her doctors, she understands that God is the source of her survival and she refuses to be burdened down by pessimistic doctors regarding her situation. “Had it not been for my mental state I would have been dead,” she says. “I surprise my doctors, especially if I have to go to an urgent care. The doctors see all the medicine I’m on, look at my medical history and say ‘but you’re so young and this is so rare.’ I just say I’m a rare individual. I have to flip it on them. I won’t allow them to make me depressed. I have to take my situation and make the best of it, because I’m not about to die.”

Napper is very well educated about lupus. She rattles off statistics and various facts and can explain the complexity of the disease in such a way even a child could understand. More importantly, she recognizes the need for more support for people battling lupus every day. So in 2011, she founded Beautiful Butterflies, Inc. She started the nonprofit because there wasn’t an organization that she felt educated, provided
support and celebrated life. She didn’t see examples of herself at other meetings. They didn’t promote activities of health and wellbeing and they certainly were not being promoted throughout her community. “Because I was diagnosed with lupus didn’t mean I was a foot away from the grave,” she says. Professionally I’m an educator, so if statistics say lupus is three times more common in African American women and it is minorities who mainly suffer from it then why are we the least educated about it? If I have to deal with this and I can use my voice to talk about everything else then why can’t I lift my voice as a spokesperson for what is affecting me and my community? No one else is standing up for it. If I have to make a change it may as well be a positive one.”

The changes that Beautiful Butterflies has already made are remarkable. One of the most important and overriding objectives of the foundation is to bring awareness to a community of minorities that is largely unaware of a disease that targets them. Beautiful Butterflies endeavors to support by addressing the whole man. There are monthly meetings like most other groups but Beautiful Butterflies takes it a step further and brings in speakers to address issues associated with lupus such as Nephrologists, nutritionists and physical therapists. Activity classes are offered and as well as consistent “how to” sessions, like how to properly apply for disability. The group even has a strategic partnership with The Social Emotional Learning Group (S.E.L.). Support and services are not just for lupus survivors but members of support systems, as well as individuals suffering from other “invisible” diseases like lupus. Ultimately Beautiful Butterflies participants are there for each other to support uplift and encourage. Napper says, “While we can’t eradicate the illness itself we can help eradicate some of the loneliness and uncertainty you may feel.”

Of all lupus cases, men account for only 10 percent. LaShawn “Soloh” Millner is one of those men. There is a misconception that lupus is a woman’s disease. Millner knows that fact all too well. When he first divulged his lupus diagnosis with friends and family he was inundated with the notion that lupus discriminated against men and did not affect them. “The first thing people would say was that it was a woman’s disease. I got that all the time,” he says.

In February of 2013, Millner, a local artist, says he remembers performing during a show and realized something wasn’t right. He just didn’t have the energy for his usual high octane performance and delivery. While he would normally mingle with the crowd during the break, he found himself in his car going to sleep. Over the course of the next few days he gained 40 pounds. He literally no longer felt comfortable in his own skin. By the time he went to the doctor his protein levels were so high they couldn’t even be measured. All of his labs were coming back with disturbing results. He was sent to a Nephrologist for a biopsy of his kidney. More tests were run and the results were fast tracked. Millner says he knew something was wrong because of the hurried pace of the medical staff. On April 30, 2013 all signs indicated he had lupus. “Usually it takes people a long time to figure out what it is, but I just thank God they figured it out,” he says. “It just worked like clockwork. Everything moved so quickly. Within two weeks I was diagnosed and placed on a medication regimen. It was a blessing, but it was scary at the same time.

Millner didn’t quite know how to process his diagnosis. His feelings ran the gamut from defeat to shock to worry to courage and ownership. Recently married with a baby on the way, he knew he had people depending on him. After throwing a two-day pity party he dusted himself off and got himself together. Just recently diagnosed with lupus, Millner is beginning to understand he is not defined by his illness. He just says it is what it is. He hasn’t been too quick to join any support groups just yet, but realizes it will probably be a good idea in the near future. He has made some changes to decrease stress in his life, but he is determined to return to those things he enjoys doing through time and patience as his body allows. “I understand now I have to make a lifestyle change for me and my family,” he says. It’s all about staying healthy, eating the right things, doing the right things and making sure to keep stress out of my life. That’s what I’m working through.”

Fourteen year old Zjya Westbrook has always played lots of team sports. From softball to basketball to cheerleading; she has always been very active. So she wasn’t too alarmed when she began having joint pain and swelling in her fingers, and toes. Her pain began to be constant. When she played sports she would be sore and tire, but she would just dismiss it and take some pain medicine.

Zjya’s mother thought it had something to do with her daughter’s diet—too much salt and sugar. They began to change it but the pain refused to subside. Following several doctor visits and many tests Zjya and her mother found out she had lupus. Both were shocked and surprised at the unexpected diagnosis. “At first I was sad,” says Zjya. “I thought my life would change, but it didn’t really. I just have to take my medicine every day. I can still do pretty much the same things.” Nevertheless, mom wasn’t immediately as optimistic. She says she was devastated. She feels the pain of having to watch her teenage daughter take large amounts of medicine including injections and watch hair fall out. It’s often hard for parents to deal with a disease, especially one like lupus, knowing there isn’t much relief they can offer their child. But Mrs. Westbrook is learning her daughter is much stronger than she knew and she couldn’t be any prouder. “It’s a hard road to travel,” she says. “I know there are times Zjya is stressed and hurting but she doesn’t show it. She will tell you but she won’t show you how much it hurts. She just deals with it. She’s very strong.”

Not only is Zjya strong when it comes to managing her lupus, but the aspiring nurse practitioner is strong in school as well. Last year she was her class president at The Academy at Lincoln. She is currently attending The UNCG Middle College and consistently makes the A/B honor roll. Zjya is determined her diagnosis will never prevent her from accomplishing her dreams. “It was hard at first, but you will start to get used to it. You won’t even think about it as much,” she says. “I watch how long I stay in the sun and those things. Sometimes it makes me feel a little limited because I can’t do as much as I used to but I’ve learned how to deal with it. If my stomach is going to hurt then it’s just going to hurt. I just deal with it.”

Zjya is able to deal with it from the overwhelming support she receives from family and friends as well as a lupus support group she attends when she has the time. Even in the midst of being diagnosed with lupus both she and her mother are grateful to God that her flare ups, and symptoms are not as bad as they could be. At such a young age and dealing with such a big disease Zjya’s quite strength is an example that no matter what comes more enjoyable life is yet to be lived.

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