Emily Smith ran 3/4 of a mile for the first time in her life in January. Next month, she will walk a longer distance for awareness about the disease that she has had nearly since birth.
Emily, 13, of Burke Centre, has been named the National Arthritis Walk Honoree for 2005, meaning she will serve as the face of juvenile rheumatoid arthritis for the 75,000 participants who are expected nationwide this year. In Fairfax County, a walk is taking place Saturday, May 20, at 10 a.m., at Robinson Secondary School. Emily is a seventh grader at Robinson and has been living with arthritis since she was 2 years old.
"She doesn’t remember a time before arthritis," said Liz Smith, Emily's mother.
Emily was diagnosed with rheumatoid arthritis at the age of 2, after her parents noticed her experiencing joint pain, difficulty walking, and often, the inability to bend joints at all. Doctors performed several tests, including a bone scan, ruling out leukemia and other more "serious" diseases.
That bone scan, not the discomfort, is Emily’s first memory of arthritis.
"I remember lying in the x-ray bed, and I could see the huge camera thing coming down. It was really scary," she said.
DOCTORS PUT Emily on low doses of the chemotherapy drug methotrexate at the age of 3, and she stayed on the drug through age 7. During that time, certain school activities, and often gym class, were out of the question because movement was extremely difficult, and after participating, often she couldn’t move. Six years ago, doctors noticed improvement, so they took Emily off methotrexate for "three drug-free weeks," according to Liz Smith.
That didn’t last long, as one morning, Emily woke up and couldn’t get out of bed. So, she went back onto methotrexate, and when the doctors noticed adverse effects on her liver, they lowered the dosage and continued adjusting the levels in a delicate balance to provide enough medication, but not affect her liver too much.
In December, Emily began a different treatment, receiving intermittent injections of the drug remicade through an intravenous (IV) tube at a hospital in Richmond. She has gone four times for the arduous process, which takes three hours, two for the remicade drip and one for a saline drip.
"It’s not so bad," said Emily, of the injections. "Last time, I had someone else in the room with me to talk to, other than my mom or the nurses."
SINCE THE injections of remicade, the arthritis symptoms have lessened. A soccer player since elementary school, Emily has been able to continue playing on her team in the Burke Athletic Club league. She plays forward and said that only occasionally does she come home and need ice or heat packs.
"I was sitting on the couch for like three hours," she said of a recent incident.
Doctors, who once set a timetable of complete recovery from the disease, can’t say for sure if or when Emily will reach remission.
"When she was diagnosed, they said 'oh, two or three years, you’ll probably see a remission.' Here we are nearly 11 years later, and we’ve never seen a remission," said Liz Smith.
So in the interim, the goal is to reduce the discomfort and inflammation in her joints to zero, and to raise awareness through activities like the Arthritis Walk.
"She's someone we often use to tell her story in front of a crowd, because it's such a moving story, yet Emily has this personality about it that she can add humor to it," said Piper Medcalf with the Arthritis Foundation. Emily was chosen to be the Arthritis Walk honoree out of nominees nationwide.
Medcalf said the panel that chose Emily were impressed at her ability to be an advocate, since she has spoken at several local fund-raisers and traveled to Washington, D.C. to encourage U.S. Rep. Tom Davis (R-11) to pass legislation to improve the amount of funding provided for arthritis patients. According to the Arthritis Foundation, the disease affects 70 million Americans and 300,000 children.
"She's amazing because she's 13 years old, and she can speak in front of a group of 200-300 people, a camera, and … she's not scared of telling her story and asking people to participate or donate money," said Medcalf. "She hasn't necessarily had the typical story, yet she has felt the pain that many others have with arthritis. She's an amazing little girl."