Moving in the right direction – Young arthritis patients surmount the pain and lead full lives
Morgan Arledge keeps a busy schedule. This recent Doyle High School graduate in Livingston immersed herself in activities such as Beta Club, 4-H, school band, church choir, and volunteering with Dreams Come True of Louisiana while also finding the time to teach flute, guitar and piano lessons. She was honored on homecoming court and received a TOPS scholarship to attend LSU. But few classmates realized that, many days, this petite brunette’s greatest accomplishment was simply getting out of bed, dressed and to school—daily tasks which required overcoming the pain of juvenile rheumatoid arthritis.
“I’d rather live completely than regret what I could have done,” Arledge explains. “I’ve been able to participate in everything. There’s nothing I regret. And despite this [disease], things have gone well.
“I don’t think I would be as determined, work as hard for things or do as well as everyone else unless this would have happened,” she says. “I think it’s helped me get a good work ethic and persevere through the hard times.”
Arledge is one of the 7,000 Louisiana children with JRA. Furthermore, one in three adults—nearly 1.4 million individuals statewide—battle some form of arthritis. More than 100 diagnoses including gout, fibromyalgia, osteoarthritis, scleroderma and lupus fall under the umbrella of arthritis. Each of these autoimmune diseases is characterized by inflammation and/or pain and swelling of the tissues surrounding a joint.
The types of arthritis and their severity vary from person to person and often progress with time. Some patients with occasional joint pain can get by taking over-the-counter pain relievers; others with persistent, chronic pain may require long-term physical therapy, joint replacement or pain relief protocols.
Such variety isn’t common knowledge. “When people hear ‘arthritis,’ they usually think of Grandma’s rheumatism [osteoarthritis], a little stiffness in her hands that was treated with aspirin,” says Karen Kennedy, Arthritis Association of Louisiana president and CEO.
“People don’t realize arthritis can strike at any age. It’s not just something you’re going to get when the birthday clock turns 50 or 60,” she explains. “There are very severe forms that need to be addressed right away because they can be life-shortening.”
Arledge was diagnosed at age 7. Two days before Christmas, the second-grader began limping. The next day, her parents became suspicious when their daughter again complained of pain while limping on the opposite leg. By Christmas morning, the girl was in too much pain even to get out of bed to see what Santa brought.
After being admitted to the hospital through the emergency room, the 7-year-old endured a battery of tests for everything from cat scratch fever to cancer. Everyone was mystified as to why a seemingly healthy, happy and active child screamed in pain when someone simply touched her hospital bed. By New Year’s, the diagnosis was clear at least to doctors. But it was not until Arledge and her family spent a weekend at AAOLA’s summer Camp J.A.M. (Juvenile Arthritis & Me) that they truly grasped the implications of living with JRA.
“When I went to camp, my parents and I knew nothing about the disease and no one else who knew how I felt,” Arledge recalls. “Not only did I find a best friend, my parents befriended other parents who understood what their kids are going through. The friend I made is from Thibodaux. We still hang out.”
Since the disease’s onset in 2001, Arledge has taken a series of medications to quell her symptoms and prevent further joint deterioration. But she remains in constant pain that ranges from mild, dull, flu-like aches to sharp stabbing sensation in her hips, legs and hands.
While she has reluctantly made some accommodations and adjustments to get through the day, Arledge refuses to allow the condition to put constraints on her life.
“I can sit at home, do nothing and feel sorry for myself,” she says, “or I can try anyways and not let anybody see what gets me down. Pity is not what I want. I don’t want handouts. I want to earn everything I have. I want people to see what I’ve been through and respect me.”
So fiercely determined is Arledge to avoid special treatment that she only recently became comfortable discussing the disease with friends. Last semester, she created an educational JRA presentation for speech class. Her personal revelation evoked an emotional reception from classmates, who were amazed to discover the disease could affect high school seniors, not just senior citizens.
“You will truly never know the effects of [arthritis] on someone, unless you are in that person’s life. Because the patient can hide it,” Arledge told the stunned class. “Anybody could have it. Your grandma could have it. A 15-month-old could have it. Even you could have it.”
And outsiders don’t understand the discomfort that those living with the disease endure daily.
John Paul Funes woke up with pain in both feet one morning in 1998. Blood tests revealed an abnormally high rheumatoid factor, associated with severe rheumatoid arthritis.
This arthritis results in the immune system attacking the lining of the membranes surrounding the joints. Research suggests some individuals’ genes make them more susceptible to infections, viruses or other environmental factors that trigger the disease. In Funes’ case, doctors suspect an unexplained illness contracted during a trip to Mexico, Honduras and Colombia may have prompted the onset.
Because Funes is allergic to aspirin and non-steroidal anti-inflammatory drugs, treatment originally consisted of Tylenol and a significant dose of steroids, which were only marginally effective. Besides leaving Funes unable to tie a tie or endure a firm handshake, the regimen resulted in a cycle of perpetual weight gain, which exacerbated the disease. The extra weight put additional stress on the joints and a damper on any desire to exercise; the lack of mobility caused the joints to stiffen.
So, when Funes found out his wife was expecting in 2001, his excitement was tempered by concern. “My fear was I wasn’t going to be able to hold my child,” he recalls. “That’s how weak my joints were and how little confidence I had. Fortunately, my worst anxieties and fears never materialized.”
In the interim, more effective medications, including Enbrel, Humira and Orencia, became available. The new group of drugs works by lowering the immune response so the body quits attacking its cells. Unfortunately, patients on such medications are also more susceptible to infections most people fight off.
Now age 43, the father of three children, former AAOLA board member and director of Our Lady of the Lake Foundation and Children’s Hospital, Funes has not missed a day of work in a long time and has even coached his children’s sports teams.
“You live with the pain every day,” he explains. “You’re trying to make sure it doesn’t progress. But every now and then, despite the best medicine and even if you do everything you’re supposed to do, you get flare-ups. There are times when it’s intolerable and you have to take more medicine. But that’s a few times a year.”
“Right now, there is no definitive cure,” says Kennedy. “Certain protocols can put certain patients into remission for a period of time. Some patients will cycle through different treatment protocols. They work for a while; and then one day they don’t work anymore, and it’s on to something else.”
Ironically, on the days when arthritis takes an enormous physical toll, both Arledge and Funes report they cope by adopting a positive outlook.
“Because you live in a world where your threshold for pain grows all the time, you just put it in the back of your mind,” Funes explains. “Working in health care, you get a different perspective. You realize you’re blessed to have the health you have.”
But maintaining that mindset in the face of chronic illness requires a lot of support. Not all patients are as lucky as Funes and Arledge to receive it. Since the ravages of the disease are often invisible and patients hide their discomfort so well, friends or family frequently discount arthritis as a minor inconvenience or psychological issue rather than a serious physical problem.
“One of the greatest challenges a person with arthritis—or any chronic condition—faces is: In not feeling well, you look perfectly fine,” says Kennedy. “People don’t see the fatigue. They don’t see the pain. It’s debilitating in a lot of ways besides physically.
“Socially it affects you,” she adds. “You don’t feel like going out and doing things. Your friends look at you and say, ‘You look just fine. Why don’t you just take some aspirin?’ It’s all this misunderstanding about what the disease really is.”
And that’s where AAOLA can help. While the organization has a lending library, medical equipment rental and rheumatologist referral list, its real value is in connecting patients to others who can commiserate, encourage and share experiences.
That support cannot be underrated. It’s important—particularly for kids—to know they’re “not alone,” Arledge says. “It might feel like it. It might seem like nobody understands. But I promise you, somebody out there does.”
Whether the cause is osteoarthritis from an old sports injury or an autoimmune-related disorder, there’s no reason to take a passive approach to arthritis. Early diagnosis and expedient treatment are essential to successful management of arthritis.
“My mom was diagnosed in 1982,” recalls Karen Kennedy, Arthritis Association of Louisiana president and CEO. “Back then, the first thing they did was put you on 20 aspirin a day and didn’t worry until you had joint damage. Then, you had ulcers and rheumatoid arthritis.
“Now, they’re very aggressive very early on. The goal is to prevent any joint damage because once that joint damage has occurred, it’s irreversible.”
Besides advances in physical therapy and immunotherapy treatments, there are adaptive techniques to help patients remain engaged in gardening, athletics and other activities. In fact, moderate physical activity is paramount in maintaining a healthy weight and mobility in the joints.
So simply avoiding diagnosis of the symptoms not only prolongs pain but causes long-term damage. “Don’t self-diagnose or go on the Internet,” advises Kennedy. “If you have constant fatigue, achy and/or red-hot swollen joints even occasionally, get checked out by a doctor.”