I Take Arthritis Awareness Month Very Personally

by V Editor Annie Tobey

They don’t complain much. It’s only when I started probing recently, in preparation for their role as “heroes” for this year’s local Jingle Bell Run/Walk for Arthritis, that I learned how my 23-year old sons feel about having arthritis. As recent college graduates, they have exciting futures ahead of them. They also face a lifelong battle with ankylosing spondylitis (AS), a form of arthritis and rheumatic diseases that often manifests itself between the ages of 17-35.

My son Daniel is only two minutes older than his twin brother Brian, but he has been fighting the disease much longer. He started noticing symptoms in high school, but blamed his hip pains on marching band. The pain spread to his back, and even his chest, and infected his sleep. His pediatrician blamed it first on his hamstrings, then on flat feet, so we got him insoles. When those didn’t make a difference, his doctor had him fitted for prescription insoles. Next came appointments with a physical therapist, who gave him exercises. “That didn’t really do much either,” Daniel recalls. By this time, he was at Lynchburg College. A physician in Lynchburg sent him for chest x-rays, which revealed no problems, so they gave him an inhaler, which of course didn’t help. Many doctors puzzled over his pain, and one finally sent him to a rheumatologist, who finally made the diagnosis and prescribed an appropriate treatment.

Daniel’s tale has an all-too-common refrain: not even the doctors recognized his problem, or the extent of it, and as a result, irreparable damage occurred. During the years of misdiagnoses, several of Daniel’s lower vertebrae and his hips fused permanently. This not only limits his range of motion, it restricts the activities he can safely take part in—a fall that would barely affect most of us could damage his spinal cord and leave him paralyzed.

 

It was Daniel’s rheumatologist who knew that Brian might also be affected. “You have an identical twin brother?” the doctor asked. “He should be tested for AS, too.”

Brian had been experiencing pain as well, though not to the extent Daniel had, and hadn’t really been complaining about it. “I was in denial,” Brian remembers. “Even though there were a lot of signs pointing to it, I really didn’t think I had arthritis until like 15 minutes before my doctor’s appointment to find out.”

Both are now receiving treatment. They’re on several medications to combat both pain and to slow the progression of the disease. The helpful meds also have side effects, most notably lowered immune system (probably why Daniel later tested positive for tuberculosis) and liver damage (patients are urged to avoid using alcohol).

Reliance on meds brings another set of issues: “It’s kind of scary,” Daniel admits “because the enbrel is miracle working, but assuming I’ll have to be on it for the rest of my life—” He articulates his worries about future prices and availability. “I don’t like being dependent on a medicine that’s so hard to get in the first place.”

Daniel recalls running out of his prescriptions this past summer. “I was feeling really, really good. I guess I got overconfident, and then one day all of sudden…it hit me really, really bad; and at those bad points, it’s like I can’t move without cringing. If I move slightly the wrong way there’s just devastating pain in my back. It’s not fun at all, I just want to stand still at those times. And when I do move it’s really slow because any slight movement will trigger another painful attack.”

Reliance on meds brings another set of issues: “It’s kind of scary,” Daniel admits “because the enbrel is miracle working, but assuming I’ll have to be on it for the rest of my life—” He articulates his worries about future prices and availability. “I don’t like being dependent on a medicine that’s so hard to get in the first place.”

Besides the ongoing aches and pains, sometimes flaring for no apparent reason, both Daniel and Brian experience ongoing frustrations. “It is really depressing all of the things I can’t do,” Brian admits, “like snowboarding, and just little things. Like even just drinking alcohol could send me to the hospital.” He recognizes, too, how much he still has to learn about his situation, such as the medication side effects and long-term implications. Both he and Daniel recognize the importance of exercise and a healthful diet, and are making strides to match their lifestyle to their needs.

As heroes for the 2009 Jingle Bell Run/Walk, both young men hope they can communicate to the public the severity of this disease in all of its forms—our nation’s most common cause of disability. They hope to help people realize that it isn’t just our grandparents’ disease, and to encourage others to contribute to the fight.

Proceeds from the event go to the Arthritis Foundation, the largest private, not-for-profit contributor to arthritis research in the world, funding more than $380 million in research grants since 1948. The foundation helps people take control of arthritis by providing public health education; pursuing public policy and legislation; and conducting evidence-based programs to improve the quality of life for those living with arthritis.

“Having felt what it’s like without the medicine,” Daniel shares, “I am so grateful for modern medicine, because without it I would probably be in pain and bedridden all the time. The disease makes me feel debilitated in a lot of ways, but at the same time I won’t be taking my mobility for granted.”

The Arthritis Foundation

The Arthritis Foundation is the largest private, not-for-profit contributor to arthritis research in the world, funding more than $380 million in research grants since 1948. The foundation helps people take control of arthritis by providing public health education; pursuing public policy and legislation; and conducting evidence-based programs to improve the quality of life for those living with arthritis.

Proceeds from Jingle Bell Run/Walk help promote research and awareness of the 100+ types of arthritis and related conditions. Not only is it important that cures are discovered and treatments improved, but that all of us recognize the possibilities: earlier diagnosis supports more effective treatment.

The 2009 Jingle Bell Run/Walk

Saturday, November 21, 2009, at 8am at Stony Point Fashion Park

Click here to sponsor us, join our teams, or sign up on your own!

Daniel Marsh: Annoyed with Rheumatoid

Brian Marsh: Team Brian

Annie Tobey: V Is for Victory

Click here for a coached podcast for the Jingle Bell Run/Walk 5k that’s suitable for runners and walkers

Click here for other coached running podcasts

Click here to become a Facebook Fan of the Arthritis Foundation Virginia Chapter