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When she gets home after basketball practice, Hayley Henke appreciates the chance to soak in the familys hot tub. The fact that the hot tub is outside doesnt bother her, even when the weather is cold.

The hot water brings relief to her knees.

Henke, 13, has juvenile rheumatoid arthritis, which causes joint inflammation and stiffness.

For Henke, the discomfort is worse when she gets up in the morning or after shes been active. An eighth-grader at Central Catholic, she takes part in volleyball, basketball and track.

The arthritis bothers her fingers, ankles, toes and wrists, but the greatest pain is in her knees.

After shes been running a while, she sometimes has to take a break at practice. Last year, she ran the 400 meters in track, but this spring she will concentrate on the 100- and 200-meter dashes, because the longer distances are harder on her knees.

Henke was diagnosed with arthritis when she was in first grade. It was especially difficult in the first six months before the condition was diagnosed and in the following six months it took to see a doctor. The pain was so bad that Henke would sometimes curl up in her mothers lap.

Henke has undergone 10 knee surgeries. During those procedures, a doctor scopes the knee to assess damage to the joints, drains the fluid and injects steroids.

Both of her knees will have to be replaced before she turns 18.

Henke returned last week from Washington, D.C., where she was one of two Nebraska representatives at the Arthritis Foundation Advocacy Summit. The event ran March 5-7 at the Renaissance Arlington Capitol View in Arlington, Va.

Henke was one of about 45 people who spoke at the Capitol to an audience that included members of Congress. She also met with Sen. Deb Fischer (R-Neb.) and people who work on medical issues for Sen. Ben Sasse and Rep. Adrian Smith.

Henke urged the Nebraskans to join the Congressional Arthritis Caucus. Nebraska is one of five states not represented in that group. The health representative from Smiths office seemed especially interested in her information, Henke said.

In her talks, Henke told her story and reminded people that children and teenagers can be victims of arthritis.

Stephanie Henke appreciates her daughters strength. Its been fun to watch her grow and be able to speak to the groups in Washington, she said.

As a Junior Platinum Ambassador for the Arthritis Foundation, Henke is given a monthly task to call attention to arthritis.

On the trip to Washington, she and her mom were accompanied by Hayleys fraternal twin, Kennedi.

Every Sunday, Stephanie injects a medicine called methotrexate into her daughters thigh. That drug prevents joint damage and is helpful.

But every Sunday night and Monday, Henke is nauseous. Fortunately, methotrexate doesnt make her throw up anymore.

Henke has trouble typing as fast as her classmates. After she types for a while, her fingers get stiff. But shes still up to 32 words a minute.

After each one of her knee surgeries, she needs crutches or a wheelchair to get around for about a week.

When she wakes up each morning, she knows if the weather is about to change. She feels stiffness or pain in her joints.

Because rheumatoid arthritis is an autoimmune disease, regular illnesses take a greater toll on Henke.

She ended up in the hospital last year for just a common flu, Stephanie said. That hospital stay lasted five or six days.

Shes partially blind in one of her eyes from the arthritis, her mother said.

But Henke is a member of Central Catholics student council.

Twice, she won scholarships to Juvenile Rheumatoid Arthritis conferences one in Florida and one in Arizona.

Hayley appreciates that her dad, Brad, bought the hot tub. Soaking in a bathtub also helps her knees.

Hayley is one of four kids in her family. She and Kennedi will turn 14 on April 28.

Connor, 15, is a ninth-grader at Central Catholic.

Cedric, 8, is in second grade at Stolley Park Elementary School.

Stephanie works at Central Catholic as a library technology aid weekday afternoons.

Because of the support of local Shriners, Henke receives medical care at Shriners Hospitals for Children in Minneapolis.

She also sees a childrens rheumatologist twice a year in Omaha.

Stephanie is the only other member of the family who suffers from arthritis. She has arthritis in her ankles.

The family is grateful for the Affordable Care Act, because the insurance covers pre-existing conditions. They hope that the replacement for ObamaCare will do the same.

In sports, Henke puts her practice time to good use. Even when she cant run, shes able to do other things, such as sit-ups.

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Central Catholic student goes to Washington to talk about arthritis - Grand Island Independent

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