Imagine feeling tired, achy and flu-like one day and facing near-complete organ failure the next, as your body’s immune system goes haywire and attacks your vital organs.
That’s the way three women with Chicago ties describe their traumatic ordeals with lupus, an autoimmune disease that affects 1.5 million Americans, according to the Lupus Foundation of America, based in Washington, D.C. The foundation has designated May as Lupus Awareness Month, and May 10 as World Lupus Day.
Most researchers believe that lupus is caused by a combination of genes and environmental factors. Indeed, lupus sufferers inherit five to 10 of the 50 to 100 genes that can contribute to the disease, says Dr. David Pisetsky, a Duke University professor and president of the Chicago-based U.S. Bone and Joint Initiative. Socioeconomics also play a role, since lower-income people with poor access to healthy foods and quality medical care are at greater risk of living under the stress that can worsen the symptoms, Pisetsky said.
Lupus is also two to three times more prevalent among women of color — African-Americans, Latinas, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders — than among Caucasian women.
Sherie Yvette, a Roseland native who lives near the St. John de la Salle Catholic grammar school she attended as a child, says the first warning of her life-changing illness occurred nine years ago when she had little appetite for two weeks and her urine turned a chocolate color.
She took a urine test on a Saturday in 1998 at the clinic where she works as a nutritionist. Doctors discovered she had acute renal (kidney) failure, and had to rush to the emergency room. At the ER, she said, “All of a sudden, a catheter was put in my chest. They told me I needed chemo and dialysis. They were trying to keep me alive; to keep my organs from failing.”
Yvette was diagnosed with Lupus Nephritis only after having a kidney biopsy. She was given immunosuppressants, which are used differently in lupus patients than in cancer patients. The drug, which Yvette took through an IV for six months, caused her hair – the hair she had left after the rest fell out – to become matted when it got wet.
“My hair stylist had to cut it,” she said. “I had a crew cut for a long time.”
“It was very scary, and it was devastating,” said Yvette, 50, who works part-time as a runway model and as a Whitney Houston tribute artist. “I had never even heard of lupus. No one in my family knew anyone with lupus.”
Lupus flareups, without warning, would hit with a vengeance, requiring new rounds of treatments and leaving her muscles so weak she couldn’t walk or dress herself. She retained so much water, she gained 50 pounds and had to stop working for two months. She took physical and occupational therapy for eight months, to learn to walk again and regain her balance. Another flareup caused her kidneys to fail in 2004.
“I’m not going to say I didn’t cry sometimes,” she said.
Yvette said she has managed to keep moving and stay positive by surrounding herself with positive people. She got uplifting news when her brother, Jihad, proved to be a match as a kidney donor. She got the transplant in 2005 and remained stable for six years. Today, Yvette is in remission. She stays vigilant in maintaining her health, and working on her music act.
“I like to inspire people,” she said. “My church, my family and my friends are what keep me going.”
Lauren Denewellis of Joliet says her first warning came at the age of 20 in the spring of 2012 when her tiredness and joint pain prompted her doctor to believe she had fibromyalgia. She went to a specialist who misdiagnosed her as having Sjogren’s (SHOW-grins) syndrome, an immune system disorder characterized by dry eyes and a dry mouth.
Misdiagnoses are common because lupus’ symptoms — anemia, fatigue, skin rashes, joint or muscle pain, on and off fevers and/or sensitivity to sunlight or UV light (photo-sensitivity) — vary with each person and can signal many other illnesses, said Sarah Stothers, RN, a national nurse health educator for the Lupus Foundation of America.
After her misdiagnosis, Denewellis kept getting worse, vomiting and spiking a 103-degree fever. She ended up with brain swelling and fluid on her lungs, and had to be air-lifted to Loyola University Medical Center later that year where doctors diagnosed lupus.
“I completely forgot who I was, and was scared that I’d never by myself again,” Denewellis said. She started immunosuppressant treatment, endured spinal taps and underwent a process that separated plasma from her blood.
After she was discharged, she had to be rushed back to the hospital with heart, respiratory and kidney failure.
“I thought I was going to die,” said Denewellis, now 25 and married for the past year.
She underwent dialysis, more rounds of chemo and had to learn to walk again. Her kidneys rebounded, and she has been in remission since.
Denewillis must still take precautions. She avoids the sun because ultraviolet rays can cause a lupus flare.
“I wear sun hats, lots of sun screen, and I avoid the sun when possible,” she said.
“It’s a total adjustment,” said Denewellis, who participates in the Lupus Society of Illinois’ walk for a cure in Naperville. “…[And] it’s important to have your community and family around you. I thank God every single day that I have working kidneys and didn’t need a transplant. I am so thankful for the doctors who did and still do everything in their power to keep me healthy.”
Tricia McCrone, a former producer of “The Jenny Jones Show” in Chicago and a Loyola University alum, suffered her first lupus symptoms after she moved to Las Vegas and spent lengthy periods out in the sun.
“I was very, very active in my late 20s, and I loved being in the sun,” she said, who started doing public relations for singer Wayne Newton soon after her move to Vegas.
When McCrone was on a family vacation in Hawaii, she developed a rash all over her body after getting a massage. The rash went away after she endured side effects from the prednisone she was prescribed for the rash. She then then forgot about it.
“I was working out all the time, running and taking hip-hop and other dancing lessons,” McCrone said.
The next sign occurred when McCrone, who turned 47 in April, was 30 years old and started having excruciating joint pain when she knelt to fill her dogs’ food bowls. Then she started getting terrible headaches.
“I stayed in bed that whole summer,” McCrone said. “I felt run down, sort of like having the flu every day. Everything ached. I started to get depressed.”
Her doctor ran tests and told McCrone to go to a rheumatologist because she appeared to have lupus. McCrone’s sister Kathleen (who is married to Newton) went into emergency care mode and arranged for Tricia to see the top lupus doctor in the world at the time — Dr. Bevra Hahn at UCLA. Even after Hahn set out a lupus treatment plan, McCrone, who still couldn’t walk at times due to pain, said she didn’t let the whole thing sink in.
She found the support she needed to finally deal with the illness after she met supporters who also suffered from lupus. She also gained strength from awareness advocates such as Back Street Boys performer “Howie D.” Dorough, whose sister died from the disease, Lupus LA President Adam Selkowitz, and Lupus LA founder and her own physician, Dr. Daniel Wallace.
McCrone relied on her support system as she got through other hurdles, including suffering through painful fibromyalgia and switching to a chemo drug that weakened her immune system and caused her to easily catch colds. Through it all she is thankful for her supportive family and friends, and has learned to listen to her body so she doesn’t overextend herself.
“You learn who your friends are,” she said. “You may be planning to go to an important event, but two hours before [it starts], you realize you’re too tired.”
“I’m so lucky I have this group of friends and my family,” she said. “We can lean on each other.”
McCrone also takes care to eat “clean,” put on sun screen vigilantly and stay positive. She’s had an easier time of it lately — she’s been on the borderline of remission for two years — because she’s happy; she’s engaged to be married in October.
Yet she still never feels fully rested or even completely well.
“It’s like you have a little bit of the flu,” said McCrone, who previously co-hosted a Las Vegas radio and TV celebrity-interview show with John Katsilometes, an arts and entertainment columnist at the Las Vegas Review-Journal.
McCrone is now focused on being part of raising awareness about lupus, including supporting a new Lupus LA campaign, One Cure, at reachme.tv/onecure. She hopes the many celebrities talking about dealing with lupus will heighten the disease’s ability to raise funds for research. Those famous faces include Nick Cannon, Selena Gomez, Seal, Toni Braxton and Cori Broadus, as well as philanthropist Kelly Stone, actress Sharon Stone’s sister.
“It’s so inspiring to see people living, functioning, getting married and having children,” McCrone said. “It’s not a death sentence.”
Milly Diericx, a Mexico City energy therapist, has written a book, “Befriending the Wolf: The Guide to Living and Thriving with Lupus,” to help others find ways to keep their lives happy, calm and filled with good nutrition.
She named her book in the same way she explained to her children the nature of lupus: “It’s like living inside your house with a hungry wolf. You never know when it’s going to attack or what it’s going to eat. You have to keep the wolf happy, fed and calm so it won’t attack you. That’s what you have to do with your immune system — so it stays quiet and happy. Emotions are a big part of it. If you’re not dealing with your emotions properly, it’s just brewing, waiting to arise.”
Diericx, 47, suffered from unexplained fever and skin rashes since she was a child. It was only after she gave birth to her second child 16 years ago, and was exhausted by taking care of the newborn and a three-year-old, that she suffered a full-blown lupus flare.
“I decided to try everything,” said Diericx, who is pursuing her PhD in thanatology, or the study of dealing with grief and other psychological trauma associated with death and dying. “I am very adventurous, and I believe people with chronic illness are very daring.”
Diericx takes supplements and vitamins tailored for her needs, eats organic, fresh and healthy foods and assiduously avoids junk food, and believes in acupuncture, massage and energy-based treatments such as Reiki and rethinking long-held but misinterpreted beliefs.
Though Diericx calls on lupus sufferers to work toward personal goals, she says it’s a delicate balance because a key part of controlling the disease is getting adequate rest.
“The idea is to thrive in your life, not just suffer through it,” she said. “That’s no life at all.”
NOTE: On June 11, the Lupus Foundation of America is hosting a “Chicago Walk to End Lupus Now” event at Montrose Harbor. Check-in for the 3.1-mile walk is 4 p.m. Visit support.lupus.org for registration and more information.
Sandra Guy is a local freelance writer.
TIPS FOR LIVING WELL WITH LUPUS
Milly Diericx, a Mexico City energy therapist, has written a book, “Befriending the Wolf: The Guide to Living and Thriving with Lupus.”
She advises that lupus sufferers:
— Consult regularly with their doctor and get a blood test to determine what, if any, supplements they need. It’s a bad idea to randomly take supplements, since fat-soluble vitamins can create havoc with one’s immune system.
— Confront and deal with your emotions.
“No one tells you how to deal with the sadness or anger,” Diericx said. “They just say, ‘Stop crying’ or ‘Pretty girls don’t get angry.’ We need to express our emotions to get the out of our system.”
Diericx is working to set up lupus treatment centers at 14 MediAccess clinics throughout Mexico, complete with doctors, dentists, nutritionists, obstetrician/gynecologists, acupuncturists, Reiki practitioners and mental health professionals.
“I believe everyone needs to find their own recipe,” Diericx said. “You have to find the recipe that suits you.”
Sarah Stothers, RN, a national nurse health educator for the Lupus Foundation of America, advises the following:
— Start building a strong rapport with the doctor —rheumatologist, dermatologist or other physician — who treats your lupus.
— Stay organized. Keep a symptom journal. A perceived symptom may be a side effect of a medication rather than that of lupus, so a log can help doctors figure it out.
— Obtain copies of all laboratory test results and bring them and medical records to doctors’ appointments. Doctors may not have the latest test results from another doctor, so you can keep everyone updated.
— Write down the top five questions, in priority order, you want answered when you see a doctor.
Stothers said she remains hopeful that more tailored, personalized medications will more efficiently treat lupus than today’s broader immune-suppression solutions — particularly with such a strong and vocal constituency.
“The future of medicine is personalized medicine,” she said. “The lupus community is one of the tightest-knit I have ever been involved with.”
If anyone has the drive to boost their cause, they do.