Meghan Mitchell is one of nearly 300,000 American children affected by juvenile arthritis, and one of only a handful in the Capital District who suffer from the condition.
At times it can be painful and debilitating. Other times it can be non-existent.
Meghan, 12, a seventh grader at Sand Creek Middle School, has been battling arthritis since she was first diagnosed at age 7.
Recently, she and her mother, Thomi Mitchell, 39, took a break from preparing for the annual Arthritis Walk on Saturday, May 12, to talk about the condition.
They talked about the confusion and terror of first hearing that Meghan had juvenile arthritis.
She was having trouble reading in first grade. We made an appointment to see an optometrist to see if she needed glasses, said Mitchell, a third-grade teacher at Saddlewood Elementary School.
Almost immediately, the optometrist noticed swelling of Meghan’s eyes, which in some children is a telltale sign of juvenile arthritis. She didn’t need glasses to help her read, she needed medication to ease the swelling and take the pressure off her optic nerve. Meghan was suffering from Uveitis, a condition that affects 13 percent of children diagnosed with juvenile arthritis.
`Initially we were terrified because there was not a lot of info. There were no support groups so I had to go on the Internet, and I heard horror stories,` said Mitchell.
Meghan could go blind or lose use of her limbs if her condition isn’t treated. Upon diagnosis, doctors pinpointed Meghan’s knees and ankles as the location of her arthritis.
Some children have it much worse, said Meghan. It spreads to many joints and leaves them wheelchair bound, barely able to control the condition with the handful of medications available.
It wasn’t until she became exposed to other children living with the condition that the family got a taste of how serious juvenile arthritis is.
They also got a taste of how deceptive it could be.
Last February, Meghan’s condition went into full remission. There was no sign of the arthritis for six months. In some cases it will go into remission, never to show up again, said Mitchell. That wasn’t the case for Meghan.
Meghan’s arthritis returned after six months, and it returned with a vengeance. Again, an optometrist recognized the swelling in Meghan’s eyes. When the time came to tackle her condition once again with medication, the arthritis had spread to her fingers, Mitchell said.
`I have to be more careful with what I do. If it’s too strenuous, it may hurt me,` Meghan said. `I can’t always go out and play with my friends and sometimes miss school because of doctor’s visits.`
What keeps Meghan going and able to live through the aching joints and stiffness is a `cocktail` of medications.
Meghan’s cocktail includes non-steroidal medications; Remicade, a biologic agent used to treat inflammatory disorders; daily eye drops; and Methotrexate, a drug commonly used in conjunction with chemotherapy for cancer patients.
Meghan’s monthly dose of Remicade, which has to be administered by a physician, costs the family $60,000 a year. And when Meghan goes to receive Methotrexate, she has to get the drug at an Albany oncology lab.
As she sits in the waiting room for a doctor to administer the drug, children battling cancer stare at her and parents wonder why her child has hair and is able to walk to and from the appointments, said Mitchell.
It makes Meghan feel guilty every time, she said.
`It’s not so much that I’m scared. I just feel out of place. It feels like I shouldn’t be there,` said Meghan.
The experience has changed her outlook on life, and has made her realize that no matter how bad her arthritis may seem some days, some have greater obstacles to overcome.
Meghan and her mother will be walking at the 2007 Arthritis Walk on Saturday, May 12. It will begin at Sand Creek Middle School and make its way to The Crossings of Colonie.
Meghan has been named this year’s Honorary Youth Walk Chair.
The annual walk is one of the largest fundraisers of the Northeast Chapter of the Arthritis Foundation. Last year, 400 people walked in the event at the school and raised roughly $36,000.
To join in the walk, visit www.arthritis.org or call 456-1203.“
