Do you know that there are at least 125 arthritis-related diseases?
Also, are you aware that arthritis is the number one cause of disabilities in Rhode Island, as well as across the country?
Further, the disorder impacts 50 million adult Americans, including 237,000 Rhode Islanders, plus nearly 300,000 children nationwide, including 1,000 Rhode Island youth.
Well, Pilgrim High School student Alyssa Wilcox, 17, knows and she’s made it her mission to raise awareness about the topic in hopes to help those who are dealing with the disease. She is studying the issue for her senior project.
Her goal is not only to ace the assignment, but also inform elected officials that they need to establish raising awareness as a national priority.
“I want to make a difference in some way,” she said.
In fact, Wilcox, along with older sister Stephanie Romano, project mentor Renay Houle and Rebecca Farnlof, associate vice president of public health and advocacy for the Arthritis Foundation, traveled to Washington, D.C. last month for the 14th annual Arthritis Foundation Summit, a three-day event in which arthritis advocates from across the country addressed members of Congress and discussed ways to combat the problem.
For the first time in the event’s history, said Houle, representatives from all 50 states were in attendance.
To Wilcox’s delight, she was able to chat with Congressman Jim Langevin, Senator Jack Reed, as well as the aids of Congressman David Cicilline and Senator Sheldon Whitehouse.
Additionally, she presented them with 1,500 letters from advocates requesting that they develop more of a sense of awareness for arthritis.
“It was awesome,” Wilcox said. “Seeing the looks on their faces and how proud they were was a really nice feeling. It made me feel good, like I accomplished something.”
In an email exchange, Langevin commended Wilcox for her dedication to the cause. He described her as an “impressive young woman, who clearly has a determination to help others facing difficult challenges.”
Also, he said he agrees with Wilcox that elected officials need to raise awareness of arthritis and the impact it has on families.
“I pledge to continue being a vocal advocate for increased funding for the National Institutes of Health and the Department of Defense medical research programs that directly support research into treatments for arthritis and other disabling conditions, while simultaneously boosting public-private partnerships and job growth in the field of biotechnology,” he said.
Langevin is also pushing for a vote on legislation titled, the Patients’ Access to Treatments Act. This legislation, which he has co-sponsored, would make specialty medications more affordable for patients, increasing their quality of life and reducing the need for more costly hospitalizations and surgical interventions.
For Wilcox, the issue of arthritis strikes a personal chord because Romano suffers from ankylosing spondylitis, a form of arthritis that causes inflammation of joints between spinal bones, as well as between the spine and pelvis. At first, doctors weren’t sure what was causing her pain. Eventually, they determined the culprit.
“My sister was misdiagnosed for 14 years of her life,” Wilcox said. “We didn’t know what it was, but it was progressing and nobody could figure out what she had. It was so bad that she couldn’t even get out of bed.”
Eventually, doctors were able to accurately diagnose Romano by the time she was 28. By then, Wilcox developed an interest for arthritis.
“I had no idea what it was until she was diagnosed and I helped her along the way with dealing with it,” she said. “But, then I wanted to learn more about it so I could help other people understand. Usually, they don’t think arthritis can affect someone so young.”
Unfortunately, some forms of arthritis impact infants.
“Babies can’t crawl because it’s too painful,” said Houle.
According to the Arthritis Foundation, more than half the people suffering from arthritis are under the age of 65. Oddly, the disease affects women twice as much as men.
The Foundation also reports that cases of rheumatoid arthritis are up to three times higher for females, while lupus and fibromyalgia, two arthritis-related conditions, are up to eight or nine times as many for women. However, gout is more common in men.
Through research she’s conducted, Wilcox said she was astonished to learn that different types of arthritis each have unique symptoms and severity levels. Some even impact specific parts of the body.
“There are so many kinds and types and most people don’t know the effects it has on people,” she said. “People hear about cancer and heart disease all the time. Arthritis doesn’t click in their heads as something serious, but it is.”
Houle, who works as an assistant vice president of cash management for Bank Rhode Island, was diagnosed with juvenile rheumatoid arthritis (JRA) when she was 13 in 1976. She’s been dealing with complications, including chronic joint pain and swelling, for 36 years.
“It becomes part of your life,” she said. “When I was first diagnosed with it, I thought, ‘Well, I’m not that old. That has to be wrong.’”
Further, she’s undergone 21 surgeries, as well as joint replacements. These days, said Houle, replacement surgery is performed far less frequently. Instead, operations have been replaced with various medications.
But, Houle also said complications caused by rheumatoid arthritis can be fatal. Moreover, some medications prescribed to those dealing with the disease can lead to kidney damage and increase the risk of heart attack.
On a positive note, Houle said doctors have changed the way they treat arthritis. When she was a child, she was told to stay in bed and take aspirin. Now, doctors encourage patients to stay active.
Houle, as well as Farnlof, said they are thrilled Wilcox has taken the initiative to create so much awareness.
“She’s been doing a great job and Renay is a wonderful mentor,” said Farnlof. “Ignoring arthritis is unacceptable. It’s something that doesn’t have enough awareness and that needs to change.”
For more information, call the Arthritis Foundation at 401-739-3773 or visit arthritis.org/rhode-island.