GRAND ISLAND 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.
Henke returned to Nebraska earlier this month from Washington, D.C., where she was one of two Nebraska representatives at the Arthritis Foundation Advocacy Summit.
For Henke, the discomfort is worse when she gets up in the morning or after shes been active. An eighth-grader at Central Catholic school in Grand Island, 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. 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 was one of about 45 people who spoke at the Capitol this month 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.
Every Sunday, Stephanie injects a medicine called methotrexate into her daughters thigh. That drug prevents joint damage.
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, her mom said. That hospital stay lasted five or six days.
Henke is also partially blind in one of her eyes from the arthritis.
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.
Link:
13-year-old with juvenile rheumatoid arthritis visits DC - Omaha World-Herald
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