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Living with juvenile arthritis: a lifetime balancing act

Nearly 300,000 children live with debilitating immunodeficiency disease
Monday, October 26, 2009 | 12:01 a.m. CDT; updated 8:42 p.m. CDT, Tuesday, October 27, 2009
Participants of the Arthritis Walk round the track at Stankowski Field on Friday, September 11, 2009. Rebecca Staggemeier and Jackie Piel brought the Arthritis Walk to Columbia.

COLUMBIA — When Jennifer Jones was just a baby, her mother became concerned about the abnormal swelling in her daughter's knee.

Diagnosed with juvenile rheumatoid arthritis before her second birthday , Jones began receiving regular shots to improve her mobility and seeing a physician often for checkups and medical treatments. 

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While other children were able to run around and play, her limited mobility restricted her to quiet activities.

Jones, now 18, eventually learned the disease would accompany her through high school and college; in fact, it would persist for a lifetime.

She fights a disease that has no cure, no end in sight.

Arthritis and related disorders are the most common cause of disability in the United States, affecting an estimated 46 million people.

The joint-stiffening disease is typically known to hit adults older than 60, but about 294,000 people under the age of 18 have a form of arthritis, according to the Centers for Disease Control and Prevention.

Currently, there aren't enough pediatric rheumatologists to treat the large number of patients. Fewer than 200 are practicing in the United States, said Darcy Folzenlogen, director of rheumatology in MU Health Care's department of internal medicine.

Most people don't associate arthritis with young people.

"The type of arthritis I have is not something that old people get. It is a whole new experience," Jones said. "Many people just think of it as what your grandma or grandpa get as they age. But it's much more intense."

Juvenile arthritis is an immunodeficiency disease — Jones' immune system attacks her joints. Certain activities are more difficult for her. Sustained joint movement such as walking and running is often a struggle.

Since arthritis victims often have difficulty walking long distances, arthritis walks benefiting the Arthritis Foundation are held all over the country as a symbol of that struggle. 

This fall, two MU students with juvenile arthritis, Rebecca Staggemeier and Jackie Piel, brought an arthritis walk to Columbia for the first time.  Jones, along with others from the community, participated.

About $5,000 was raised for the Arthritis Foundation. Staggemeier, an honoree chosen by the Arthritis Foundation and a senior at MU, started the walk to raise awareness about arthritis in the Columbia area and especially on campus.

"People don't know that a lot of kids our age can get this disease," Staggemeier said.  

She is now in remission after struggling with arthritis for 10 years. It doesn’t currently affect her joints, only her immune system. If she becomes pregnant, that might trigger the problem again.

Jones, on the other hand, has never been in remission. Her arthritis is polyarticular, meaning it affects a large number of her joints.

She takes bi-weekly injections of a medicine called Humira. "My disease is always at a constant low point," Jones said, citing the difficulty of "having to take medicines that make me sick, getting labs done, feeling like you can't move (and) giving yourself shots."

Jones is in control of her disease with the help of regular medications and a constant watch on her workouts and activities. She said it has been a struggle, but the medicines work to prevent further erosion of her joints.

Untreated, juvenile arthritis can have dangerous complications.  Eye inflammation is one of the biggest, and it can arise with no warning. It often occurs with no symptoms and can ultimately cause blindness if left untreated.

The disease may become dormant for years at a time, but, once a person like Jones is diagnosed, the disease is an ever-present threat.

"A cure is always something in the back of my mind," Jones said. "It would be a miracle. But right now there isn't one, and I don't expect it to happen soon."

She said her doctors have helped her conquer many of the fears that she's had about arthritis; she calls them her second family. “The scariest part is looking into the future. If my joints are already deteriorating now, what will it be like in 30 years?” she said.

Physician Thomas Selva, vice chairman of MU Health Care’s department of child health, said part of his job includes helping young arthritis patients transition into adulthood while managing the disease on their own.

"It’s important for the patients to learn how to balance life while managing a chronic condition," Selva said.

Yet despite all of the problems she faces, Jones thinks of her disease as a blessing.

It could be worse, or it could improve. But she said she would never take back any of the struggles or empowerment she has experienced while dealing with the disease.

"Don't cry about something that you can't help. Face it with a smile, and do what you can to make it tolerable," she said.

"Reach for the stars. Never let anything hold you back."


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