By Josette Keelor -- Daily Staff Writer

WINCHESTER — On May 17, when the fourth annual Northern Shenandoah Valley Arthritis Walk is taking place at Sherando High School in Stephens City, Julie Rhyne will not be there.

The Winchester resident, and chairwoman of the walk, who has been part of the planning committee since it began four years ago, will instead be in Orange County, Calif., to receive an award and attend an arthritis walk on the West Coast as one of the two 2009 National Honorees of the National Arthritis Foundation.

"I feel honored to go and do that," says Rhyne. "It is quite an honor for me and for Virginia."

As part of the honor, she will be featured on the walk video and in all of the foundation's marketing materials for the walk over the next year, she says. Every year the foundation chooses one child and one adult to represent it.

Though Rhyne says she regrets not being able to attend the walk at Sherando, her nomination and win are part of a greater goal that she has — to educate as many people as she can on the tragedy and frequency of arthritis.

Rhyne has polyarticular rheumatoid arthritis, which affects five or more major joints throughout the body. There are varying degrees of arthritis, she says, but all of them can be devastating, particularly in children, some of whom die from the disease.

"It's something that a lot of people are not always aware of," she says. "People are not aware that 300,000 children are affected by arthritis."

The mission of the foundation, she says, is to control, prevent and cure, but she adds that there is a huge awareness factor associated with the walks.

Arthritis is an autoimmune disease. The body begins to attack itself, fighting against the good bacteria that is supposed to protect the body and causing inflammation in any number of places, she says. It can affect the heart, lungs, eyes or internal organs, as well as the joints.

One of the most difficult ideas to deal with, living with the disease, she says, is helping people understand all that arthritis encompasses.

When many people think of arthritis, she says, what first comes to mind are osteoarthritis, which affects the joints, usually in older adults, and adult onset rheumatoid arthritis. Rhyne says that many people do not know or fully understand how much of the greater population is affected by juvenile rheumatoid arthritis and rheumatoid arthritis.

Rhyne was diagnosed with JRA when she was 14. At 34, she has outgrown JRA, but the symptoms of RA are the same. Having lived with the disease for 20 years, she says her bones and joints have suffered.

Rhyne was injured in a car crash about 10 years ago. When the airbag deployed, the bones in her arm were shattered, breaking in seven places. After she had surgery to repair the bones, Rhyne's doctor told her that she had the bones of a 70-year-old. She was 23.

Though not much was known about the disease when Rhyne was diagnosed, research over the last 20 years has provided for medical advances.

About eight years ago, Rhyne began to take biological response modifiers, which she says help to slow the progression of the disease. The treatment made it possible for her to go about her daily activities with much less pain and fewer physical problems. After about two years, however, the medication began to stop working for her.

"They work for a little while, and then the effectiveness starts to wane," she says. "It's a roller coaster; you have those good days and weeks ... [you] just do what you can."

The amount of pain she was in at times made it impossible for her to do the little things that many people take for granted. At times, she could not even put in her contact lenses, she says, because she could not raise her arms or hands to her face. There were times when she would literally crawl up the stairs to get to bed, because she could not walk.

She had chair lifts installed in her home to help with climbing the stairs. In a house with three levels, she says, it is a necessity. She also takes B cell therapy, a treatment of two infusions twice a year.

"I think it's working better than the BRMs [biological response modifiers]," she says. Each infusion takes about four hours, the second one occurring two weeks after the first. Six months later, the process is repeated.

Rhyne says she believes that it is worth the time spent at the doctor and the cost, $14,000 per infusion, which her insurance covers. The treatments help not only with the pain but also with reducing inflammation.

"I can wear my wedding ring for the first time in two years," she says.

Despite advances in the field of arthritis, there is no cure. Rhyne, though, having refused to simply live in pain or wait for a cure, has immersed herself in several organizations with the intention of educating the public about the disease as well as helping raise funds for research.

She helped start the Arthritis Walk at Sherando. The first year, the walk raised $16,000 for arthritis research, Rhyne says.

"I feel like we were the little engine that could that year," she says, because only five members organized the entire event, which brought in $22,000 and $32,000 in the following two years, respectively.

The committee's goal this year is to reach $50,000. The walk raises money to research all forms of arthritis, Rhyne says.

One of the committee members is Becky Moler, of Winchester, who has two types of arthritis — rheumatoid and osteoarthritis. She was diagnosed with RA 13 years ago when she was 39, and shares the disease with several family members, a sister who has psoriatic arthritis, another who has Raynaud's phenomenon, two first cousins who have arthritis and a 14-year-old niece, who also has two types of arthritis.

"It just floors me" how many people have arthritis, she says. "A lot of people are not aware that there's more than one type of arthritis."

This year's Northern Shenandoah Valley walk will be Moler's fifth arthritis walk; her first was the Loudoun County walk in Leesburg.

"She's one of my heroes," Rhyne says of Moler, who is the 2008 Northern Shenandoah Valley Arthritis Walk Hero for her contributions to the walk and the amount of money she has raised for the foundation.

Moler says she does not feel like a hero when she thinks of all of the children suffering from the disease.

"I want to see awareness of arthritis improve," says Moler.

Rhyne says that she had not realized, when she was younger, just how much arthritis would consume her life, how debilitating it would be.

Even though Rhyne has a master's degree in social work from the University of Tennessee, the disease has made it difficult for her to work full time in her adult life, often confining her to her home. Inactivity is another effect she has had to deal with. When the bad days outnumber the good, she says, exercise is too difficult.

Last year, Rhyne had surgery to replace her left kneecap, and she is preparing to have surgery to fuse the bones in her right ankle.

Moler, too, has had her share of difficulties.

"I was basically all but in a wheelchair in [the] fall of 2003," she says.

Since she began undertaking treatments of tumor nucrosing antagonist injections every two weeks, Moler says she has felt much better, though the pain never really goes away.

People who have rheumatoid arthritis might not display symptoms, such as decreasing bone mass or joint deterioration, to the outside world, but they might suffer from it to the point of being disabled.

For this reason, Rhyne uses the phrase "behind closed doors" to describe living with the disease when she gives speeches as part of the Rheumatoid Arthritis Information, Service, and Education ambassador program. The program is managed by the Public Policy Office in Washington and which does advocacy work. In her speeches, she explains that "behind closed doors" refers to a lack of medical knowledge about the disease until recent years as well as lack of public knowledge of the disease.

"It is a really bad disease," Rhyne says.

She is part of an effort to pass an arthritis bill that would offer student loan forgiveness for doctors entering the field of pediatric rheumatology, as well as get research money to develop programs about arthritis.

"To me the most important work I do is my work for the Arthritis Foundation," she says. "It's worth more to me than any paid job."

The Northern Shenandoah Valley Arthritis Walk will take place at Sherando High School in Stephens City on May 17 at 10 a.m. Registration begins at 8:30 a.m.. Donations are not based on a per mile basis, but are just flat donations that will go to the Arthritis Foundation. For more information call 723-4836.

* Contact Josette Keelor at jkeelor@nvdaily.com