FAMILY, FRIENDS & FAITH
How one teen pulled through life-threatening disease with ‘sense of gratitude’ intact
If Desarae Harding Fowler would have known at the time how the disease would affect her life, she would have been scared. But it wasn’t until later that she began to understand just how serious her condition could be. It was then that she began to worry.
Her worry increased once she started chemotherapy treatments, something usually reserved for cancer patients.
But that’s all in the past, in a place where she hopes the disease will stay.
Desarae is in remission, but she remembers vividly the trial of her health that was lupus. If it weren’t for family, friends and faith, she might not have pulled through.“I felt that no one could possibly understand the pain, the loneliness, discouragement, the feeling of being different and having all these health issues at my age,” she said. “My doc told me a couple of times that during these years I would suffer more pain than an adult would suffer in his entire lifetime. So, to me, how could anyone understand? But two things brought me comfort. One was through my religion, the other was through family and friends.”
Support group: Family
Desarae was diagnosed with systemic lupus erythematosus in 1998; Bill Clinton was president, the national minimum wage was $5.15 an hour, and one of the decade’s most popular authors, John Grisham, released his ninth book titled “The Street Lawyer.” Desarae, now 26, was 14 years old.
“I couldn’t do a lot,” she said. “I couldn’t be in the sun and had to be careful in groups that I didn’t get sick.”
That was difficult for the Robert Stuart Junior High student, who liked to run track and play soccer
and basketball.
Desarae found she had lupus after her parents took her to a doctor because of continued joint pains and a rash that developed around her eyes. She thought it was something minor, maybe growing pains or hormones. She never dreamed it would be lupus — and didn’t know what lupus was at the time.
Desarae was referred to Primary Children’s Medical Center in Salt Lake City, where for the next three years she underwent chemotherapy treatments.
“The rheumatoid doctors here didn’t want to touch her,” said mom Cindy Harding. The disease “was too brittle, too critical.”
At first she didn’t respond to the treatments, and more than once her parents thought they’d lose her. Her major organs were attacked, and large holes developed in her liver and kidneys. She vomited a lot and felt drained from her illness as well as the chemo treatments.
“It was hard to watch a teenage body deteriorate so quickly,” Cindy said.
In order to care for her daughter, Cindy needed to learn about lupus. A doctor told her that, because she was a concerned parent, she’d eventually know more about her daughter’s disease than he did. She read books, visited websites, heard from other lupus patients.
“I’m not a pro by any means, but for her I knew what was going on,” Cindy said, noting that lupus affects its victims differently. “I couldn’t tell you how to treat someone else but I knew what her body was doing after a few years. ... If you want to help the people you love, you must learn as much as you can.”
Desarae’s dad, Bruce Harding, and her siblings waited on her, tried to cheer her spirits. But it was her mom who saw her at her worst.
“Holding my hand or holding my hair, she was there,” Desarae said. “She probably knew the best how ugly this was and what I was experiencing. Then she would always try to make lemonade out of the lemons I grew.”
Eventually the chemo started working, and Cindy started visiting with other lupus patients at Primary Children’s, where she’d listen to their stories. Every story was different, she said. On later visits to the hospital, she’d find that some of the patients had died.
“I knew that every time I left with a sick daughter that I was at least taking her home alive,” Cindy said. “I started feeling like a very lucky parent.”
Support group: Friends
Desarae said that at first, when she didn’t understand the disease, she thought it would be a way for her to get more attention.
But friends didn’t see it that way, according to Jolyn Smith. Desarae confided in friends about her pain, and they seemed to understand that she was going through something significant. Even so, she didn’t want to be the center of attention, said Smith, a friend since high school. Desarae was once mentioned during a school assembly about the disease. She didn’t like that, Smith said.
“I loved her outlook on life,” she said. “She was down at times, but (when she could) she was always helping other people.”
Desarae remembers Smith and other friends showing compassion to her by changing their activity plans if it was something she couldn’t participate in. Instead of going out, for instance, they’d bring over a movie to watch. And she remembers the time they gave her a surprise 16th birthday party.
“My beautiful friends,” Desarae wrote in an e-mail. “They never tried to pretend to know what I felt like or what I was going through — but they would always be there for me. Write uplifting notes, cards, pray for me, gifts, sleepovers, laugh with me and cry with me. ... Often Jolyn would bring me smoothies and cookies, try and pull me out of bed, uplift me and encourage me — make sure I knew I wasn’t alone ...
“Although I felt no one could possibly understand me, my trial, my pain, I was hardly alone. I was always surrounded by people who loved me. They gave me motivation to fight for life.”
Attack group: Lupus
Lupus is a chronic autoimmune disease — creating autoantibodies that attack and destroy healthy tissue — that can affect any part of the body. Desarae calls it a “tricky” disease with episodes of flares and remissions, and which can range from mild to life-threatening, depending on the severity and type of lupus.
There are a number of unanswered questions about lupus, but genes likely play a role in its development, according to the Lupus Foundation of America.
“While a person’s genes may increase the chance that he or she will develop lupus, it takes some kind of environmental trigger to set off the illness or to bring on a flare,” according to the foundation’s website. Those triggers may include an injury, cold or viral illness, exhaustion, stress or pregnancy, among others.
Though it’s not unheard of for men to have lupus, it’s most common in women because of their greater estrogen levels. Women often notice more symptoms of the disease before menstrual periods or during pregnancy when estrogen production is high, according to the foundation.
Lupus is rare in Caucasians and is not prevalent in south-central Idaho, said Dr. Akavaram Reddy, a rheumatologist at St. Luke’s Magic Valley Medical Center. He said it’s not uncommon to see between 15 and 50 cases of lupus for every 100,000 people. The disease, he said, is more common in African-American, Asian and Hispanic populations.
Lupus is a complex problem which, if not treated properly, can cause miscarriages, kidney failure, heart disease, strokes and early death, he said. Chemotherapy is used to treat the disease, depending on the type, severity and patient, but he said new drugs such as mycophenolate also are used to treat lupus patients.
“We have a lot more choices than we did 10 or 15 years ago. Treatment has improved considerably,” Reddy said. “There’s a wide spectrum of treatment. Everything is based on the patient. It’s very individualized.”
Once a person goes into remission, a patient can still experience flares. A thankful Desarae so far hasn’t had any, she said.
Support group: Faith
Desarae ended chemo treatments in summer 2001 and was declared in remission in 2002. She married Nathan Fowler and together they have two children — Sydney, 4, and 2-year-old Jack. Nathan had plans to become a teacher but changed his major to law for better financial security if Desarae were ever again to experience medical problems.
The family now lives in Boise, but they visit Twin Falls often. Her parents still keep Desarae’s room for her at their home.
She takes iron pills and anti-inflammatory medicine — “it’s kind of part of lupus even though I’m not flaring,” she says — but for the most part she’s able to do the things she enjoys. She still keeps in contact with Smith, who now lives in Missouri, though it’s mostly through e-mail and Facebook.
And Desarae, a member of The Church of Jesus Christ of Latter-day Saints, still has her faith. It was that faith in God and the encouragement and prayers of church leaders that also helped her through the rough patches.
She created a blog where she writes about the challenges she’s had with lupus and her feelings about her faith. Looking back, she says the disease gave her the opportunity to better reflect upon Jesus Christ and the suffering he endured. It also taught her something about herself and relationships.
“I don’t really know why I have been given this trial,” she wrote in an April 16 blog post. “I KNOW it is for me, it has shaped who I am, how I feel about others and how they should be treated. I have a sense of gratitude for life and health and love that is hard to match unless you watch your life almost slip away.”
"caption under the picture- Desarae Fowler, 26, thinks about a question as her children Jack Fowler, 2, and Sydney Fowler, 4, hang out at her parents’ home Sept. 10 in Twin Falls. Fowler said it was family, friends and faith that helped her through the trial that was lupus. (DREW NASH/Times-News)"
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