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Teen fights for typical life despite pain

15-year-old MVHS student copes with rare form of arthritis

Katie Taves sounds like a typical high school student. She likes yoga and cooking, dislikes geometry and begrudgingly accepts B grades. But for the last five years, 15-year-old Taves has suffered from a rare form of juvenile arthritis in 27 of her joints. Despite the fatigue, the stiffness, the chemotherapy and the steroids, she remains positive and optimistic, and said she doesn't let the disease bog her down.

Katie Taves is an honoree at the 2014 San Francisco Walk to Cure Arthritis on May 17, a national event that raises money to prevent, control and cure arthritis. A freshman at Mountain View High School, Taves copes with juvenile idiopathic arthritis, an autoimmune disorder where the body's own immune system attacks joint tissue. This leads to stiffness and swelling in the joints, as well as pain, fatigue, and the occasional, but severe, flare-up.

To deal with arthritis, Taves has to take methotrexate every week, a chemotherapy drug that reduces inflammation and slows the progression of the disease. Her mother, Suzanne Taves, said the plan is to give her the methotrexate on Friday, deal with the sickness and nausea that comes with it on Saturday, and hopefully by the end of Sunday the symptoms subside in time for school. Sometimes they do not.

During the school week, Taves has to deal with stiffness and pain in the joints that make it hard to get out of bed. She wakes up at 5:45 a.m. and stays in bed for about an hour before getting up. Cold mornings make it even worse, and she needs to wear gloves or her fingers will freeze up.

Taves gave herself a time cushion and set up her schedule to have a study hall first period, and no class for second period.

Once at school, Taves has to manage her energy to avoid getting exhausted. She compared it to balancing a budget, making sure she doesn't "overspend" her energy. She said she feels pretty close to normal from noon to about 5 p.m., and by 6:30 p.m. the fatigue starts to set in.

Despite the difficulties, Taves manages to keep an upbeat attitude and stay resilient. Her physical education teacher, Barbara Kaufman, said you can't help but like her. Kaufman said Taves always pushes herself in class, and on her good days she does not want to stop.

"She just doesn't show pain," Kaufman said. "She doesn't complain ever, even about the chemo."

Outside of school, Taves likes to do yoga at The Dailey Method in downtown Los Altos. Yoga is a low-impact exercise, meaning less stress on joints, and can help to stretch out some of the stiffness that comes with arthritis.

She also likes to cook and bake. Prior to the Walk to Cure Arthritis, Taves will host a bake sale on Friday, May 16, making sugar cookies, chocolate chip cookies, cupcakes, meringues, brownies and more.

Taves said she had a very active lifestyle before she was diagnosed with spondyloarthropathy, a type of juvenile idiopathic arthritis, at age 10. The arthritis started in her knee and spread to 27 joints in her body, including her fingers, elbows, back and shoulders.

Taves said when she was diagnosed, her active lifestyle was severely restricted. She used to dance, play softball, basketball and soccer, but in the years after the diagnosis, she wasn't allowed to do much of anything.

"I couldn't run, jump or play," Taves said. "No P.E., I couldn't even run with friends."

Taves attended a summer camp for children ages 8-13 with arthritis and other rheumatic diseases called Camp Milagros. Despite the three or four doctors on-site at all times, it's the closest thing some kids get to feeling normal.

"The camps brought me a sense of normalcy that I couldn't find elsewhere," Taves said.

She later attended a teen retreat for kids ages 14-18 with juvenile arthritis, where they spend the weekend in a cabin just north of San Francisco and visit the city.

Taves said she continues to keep in touch with people she met at the two camps, even though they don't live very close. If she gets prescribed a fancy new drug for the disease, she'll send them a text message to see if they're familiar with it and what the side effects will be.

Beyond building relationships, Taves said both camps teach kids to self-advocate and have inside-and-out knowledge of their disease -- and with good reason. Many people do not know what juvenile arthritis is, or are unaware arthritis can affect children. In elementary school, Taves said her school nurse did not know about juvenile arthritis, and thought she faked her injury when she tried to run and bent her ankle out of shape.

She said she is the first case of juvenile arthritis school administrators at Mountain View High School have dealt with, but that the school has been extremely accommodating and even offered to give her tutoring services.

Taves still has to face hurdles like passing the California Physical Fitness Testing (PFT). If she fails to perform them, she will have to retake P.E. next semester. So far Taves passed the flexibility and upper body strength exercises, but still has to run and do sit-ups in order to pass. Both exercises put a lot of stress on joints all over her body, which can make the test difficult, painful, and possibly dangerous.

"Isn't it crazy that she has to do that?" said Suzanne Taves, who thinks it's unfair her daughter might have to retake P.E. because of a disease she has no control over.

Katie Taves said Kaufman does a lot to help ease the pain of doing these tests. Kaufman told Taves that she can perform these tests on her "best" days, days where her joints are giving her the least trouble, to better her chances of getting through the test successfully and without injury.

Taves is soliciting funds for the 2014 San Francisco Walk to Cure Arthritis, and raised over $8,000 as of early May -- about 25 percent more than anyone else. Her personal page can be found here.

Comments

 +   Like this comment
Posted by Real life stuff
a resident of Cuesta Park
on May 13, 2014 at 12:46 pm

What a total stud; a very impressive young lady. Stay strong.


 +   Like this comment
Posted by Concerned mom
a resident of Waverly Park
on May 13, 2014 at 2:31 pm

She sounds like a wonderful girl with a great attitude. It is tragic that she is forced to pass a physical test that could be bad for her. I hope that the school district can get a waiver of some kind.


 +   Like this comment
Posted by from the heart
a resident of Bailey Park
on May 13, 2014 at 2:34 pm

May I offer the following to this brave young woman: please research the medical benefits of cannabis for fighting inflammation and pain related to it. Get yourself a medical marijuana card and try an indica strain with high amounts of cannabinoids and low amounts of THC. As someone who has struggled with pain from a neck injury, I can attest to its efficacy. Being able to use a natural plant from the earth beats out any man-made (read = big pharma greed induced carcinogen) any day. Educate yourself on your options instead of merely buying into the so-called medical field's recommendations based solely on their profit share.


 +   Like this comment
Posted by Honor Spitz
a resident of another community
on May 13, 2014 at 2:46 pm

My heart aches for this spunky young woman!! I too have an auto-immune disease that has sidelined me a good part of the time (I take Prednisone, effective but not without its "dark side.")

But seriously, there must be some way for Katie to get some special circumstances waiver. Come on; its not as though she's faking it or as though she's a slouch!! Good grief.


 +   Like this comment
Posted by let'sgetreal
a resident of Cuesta Park
on May 13, 2014 at 3:44 pm

From the Heart - You are sooooo right. I have been on methotrexate, and it is awful, along with steroids. I'm getting my card.


 +   Like this comment
Posted by Eric Ratner
a resident of Old Mountain View
on May 14, 2014 at 12:22 pm

Based on some quick and superficial research, it appears to me that a waiver is possible, although someone's going to have to talk to the people in Sacramento. If Katie or her parents are reading these comments, I suggest that they look at Web Link , a website of the California Department of Education, and in particular at parts 14 ("Can students be excused from the Physical Fitness Test (PFT)?") and 15 ("What is done to assist students with disabilities on the Physical Fitness Test (PFT)?") As the parent of one of Katie's classmates, and the husband of a woman suffering from another autoimmune disorder, I know how difficult these problems can be, and I admire Katie's efforts.


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