Whitefish 8-year-old learns to live with juvenile arthritis

A smile spreads across Hannah Gesek’s face when she talks about animals and drawing. Seemingly like most 8-year-olds, she bubbles with excitement to tell a visitor about the stuffed animal under her arm. What’s not obvious is that Hannah suffers from a disease most often associated with older adults.

Two years ago Hannah was diagnosed with systemic onset juvenile rheumatoid arthritis. With a host of medications and daily injections, her disease now seems to be mostly under control, but it has been a long journey to get Hannah to this place.

Hannah became sick after the Gesek family returned from a camping trip.

“Her ankle hurt and we thought she twisted it,” her mother Sarah Gesek said. “Then after we came home, her joints started hurting and she was getting large rashes. Every night she would have a fever.”

Doctors treated Hannah for rheumatic fever and Kawasaki disease, both of which have similar symptoms to what she was experiencing. Hannah spent time in three different hospitals.

“She could barely even get out of bed,” Sarah said. “The rashes would cover her whole body and face.”

Sarah said it was frustrating feeling like she couldn’t get answers about what was wrong with her daughter. “I definitely started praying when she got sick,” she said.

In the mornings Hannah was OK, but by nighttime the rashes started appearing and the fever would come. Doctors couldn’t see anything wrong during the daytime appointments.

“I waited until night and took her to the emergency room so they would have to see it,” Sarah said. “That’s when they took me a little bit more seriously.”

The diagnosis was a shock.

“I didn’t know kids get arthritis,” Sarah said.

Juvenile rheumatoid arthritis occurs when the body’s immune system attacks its own cells and tissues causing persistent joint pain, swelling and stiffness. Some children may experience symptoms for only a few months, while others have symptoms for the rest of their lives.

“I felt sorry for myself for awhile, but it could be worse,” Sarah said. “They were testing her for leukemia and meningitis. Kids arthritis can go away — it doesn’t usually go into adulthood.”

Sarah said doctors don’t know why Hannah has arthritis, but it is possible that she caught a virus that caused her immune system to attack the tissue in her joints.

Hannah was finally diagnosed at Seattle Children’s Hospital. Treatment began in the hospital with intravenous steroids and low-dose chemotherapy.

It’s been a struggle to find the right amount of medication that would help Hannah while limiting the side effects. The goal is to have her on the lowest dosage possible, but as the dosage decreased her symptoms would return.

“When she was on the high doses of steroids she would have mood swings and bang her head on the floor,” Sarah said. “She would get angry. It was good to get down to a lower dose.”

Now the medications seem to be keeping the arthritis under control. Mom and daughter visit the doctors office daily so Hannah can receive injections. She also takes multiple pills every day.

“I think she finally realizes why she has to get the shots,” she said. “She doesn’t cry or complain about it.”

Sarah said it can be challenging educating people to realize that arthritis is something that children can have. Even with the medications, her joints sometimes get sore and swollen.

“Kids don’t understand why she can’t keep up in gym,” she said. “It’s hard when she misses school. I want people to understand that kids do get arthritis.”

Hannah has found a friend who does understand. Her pen pal, a 5-year-old boy who lives in Canada, also suffers from arthritis.

Sarah posted a notice searching for a pen pal on the Kids Get Arthritis Too! website from the Arthritis Foundation and was contacted by the boy and his mom. Now Hannah and the boy write to each other, and Sarah has found another mom to talk to about the challenges of arthritis.

“I asked my mom to find me a pen pal with arthritis,” Hannah said. “I got a package from him. He gave me a toothbrush.”

— May is National Arthritis Awareness Month. Learn more online at www.arthritis.org.