Arthritis awareness: Speakers touched by disease share 'Commitment to Cure'

By COLLEEN JOHNSON

As if speaking in front of a room full of people is not tough enough, Doug Young had to discuss his personal struggle with a painful disease.

"I was pleased to speak so people will be aware," said Young, a local businessman whose daughter was diagnosed with rheumatoid arthritis when she was just 23 years old. "The Arthritis Foundation is not new in the country, or to Middle Tennessee, but it is relatively new to Murfreesboro."

Modern medicines enabled Young's daughter to earn a diploma, become a teacher, marry a supportive husband, and have a child. However, many arthritis patients are not as fortunate.

Arthritis is a painful disease that causes stiffness and sometimes swelling in and around joints. For arthritis patients, everyday movements can become extremely difficult. There is no known cure for arthritis.

This past Wednesday, the Arthritis Foundation hosted a "Commitment to a Cure Breakfast" for the first time in Rutherford County. The event was held at the Stones River Country Club, and many members of the community attended.

One by one, arthritis patients stood before the audience and spoke about their personal struggles and accomplishments.

Melinda Poff, a former track star who was diagnosed with severe rheumatoid arthritis when she was just 25, described how the disease ended her ability to run, to finish college, and to have children. Teaching Sunday school at church will have to satisfy her childhood dream of one day teaching kindergarten, she said.

"I didn't think it was a disease I should have," said Poff as she described having to be carried around the house by family members when the disease was at its worst. "I thought it was an old person's disease."

Poff is not alone in thinking arthritis is a disease that only afflicts the elderly. This is a stereotype she and other patients are trying to change.

Arthritis appears in more than 100 different forms, and the cause of all of them remains unknown. There may be a genetic link, but doctors still do not know for sure.

According to the Arthritis Foundation, arthritis affects one in three adults, is the No. 1 cause of disability in the United States, and costs more than $86 billion a year. The Arthritis Foundation estimates that approximately 66 million adults are living with arthritis in the United States, and about 300,000 children have some form of arthritis.

Ashley Carpenter was just 16 months old when doctors diagnosed her with juvenile rheumatoid arthritis. Her condition is described as "onset systemic," which means she has a very active form of the disease. This form affects her five major joints as well as her five major organs.

Ashley's mother, Tammy Carpenter, fought back tears as she stood before the crowd at the recent breakfast and described their family's personal struggles. Ashley, now 6, comforted her mom and occasionally gave the audience huge smiles.

"As you can see, she looks like a normal child," said Tammy, her voice quivering. "But she is on all sorts of different medicines. We buy ibuprofen by the pint. It costs $3,000 a month just to pay for her medical needs."

When it comes to medication, little Ashley may be luckier than the arthritis patients who came before her. Improved treatments keep patients more comfortable than in previous years.

"There has been more improvements in the drugs in the last 10 years," said Tammy. "But we still need more research, so we can find a cure and the (next generation) will have hope. You feel so helpless and hopeless when this happens to your family."

Ashley takes an injection every morning, and Tammy said "right now she is doing pretty good."

Doctors predicted Poff would be wheelchair-bound by the age of 25. She is now 35 and still standing.

"Because of medications, I don't have the deformities in my hands," said Poff, as she held up her hands for the audience to see. "Just think of how much better the medications will be for future patients."

"As I understand it, the biggest improvements have been in pain management in the last 10 years," said Ronnie Shaw, a member of the Rutherford County Arthritis Advisory Council. "And in the medications that help to stop disfigurement."

In the past, many patients suffered severe disfigurement, especially in their hands. In a video titled "Faces of Arthritis," an elderly gentleman who was diagnosed more than 30 years ago described how he had become completely dependent on other people. His hands and fingers were permanently swollen, disfigured and almost useless.

"You don't really see that anymore," said Shaw. "Medicines have improved, but what we really need is a cure, and there is no cure."

The Arthritis Foundation is just one of many research foundations in need of support, but patients such as Poff, Carpenter and Young's daughter serve as living proof the research being done is producing results.

"When you take in account the number of caregivers as well as patients, it really affects a very large percentage of people," said Young. "And it can't be vaccinated or treated. It is going to take research to get it done."

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