Afflicting the young

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Afflicting the young - Arthritis can strike at a young age

http://www.advertiser-tribune.com/page/content.detail/id/509278.html?nav=5005

By Ann Kromer, mkromer@...

POSTED: September 30, 2008

Although arthritis often is regarded as a disease that affects mostly the

elderly, the disease also can strike children. Baker and Krupp

of Tiffin know that all too well. They were diagnosed with juvenile

rheumatoid arthritis before they were teenagers. The girls and their

mothers, Deb Baker and Annette Krupp, respectively, spoke about the disease

and how they have adapted to it.

" Pretty horrible " is Deb Baker's description of the onset of rheumatoid

arthritis for her daughter, . At age 12, had been complaining

of aches and fatigue. Her parents, Deb and Ken, thought it could be a virus

or just the " growing pains " of a pre-teen. That mild concern soon turned to

alarm.

" I remember the day so clearly that she came into our room in the morning -

it was Saturday morning. She put her hands on our bed, and said 'I think

something's wrong.' Her knuckles were red, inflamed, swollen and hot. It

scared me, " Deb said.

Deb's brother died of lupus, and she said she feared could have it.

The following Monday, was in the doctor's office. Blood tests and

other symptoms pointed to juvenile rheumatoid arthritis. At the end of the

school year, Deb and went to Toledo to meet with Dr.

Treuhaft, a specialist in pediatric rheumatology. He started on

medication and sent her off with her family to a camp, but she could not

participate in swimming and other favorite summer activities.

" She had a tough summer. She was not able to hike or do things she was used

to doing. She was very sore. ... She had no appetite and she dropped a lot

of weight, " Deb said. " The biggest issue was to get the swelling under

control so her joints weren't damaged. "

needed blood tests every six weeks to keep the medication's side

effects to a minimum. She was to eat an unrestricted diet of nutritious

foods and have weekly physical therapy in a heated pool. The water at the

YMCA was too cold for comfort.

" She hated it. At 12, the last thing you want to do is be different. This

was screaming, 'I'm different.' She fought it, " Deb said. " I was really

hopeful that we would be able to put her in some kind of support group or

connect her with somebody else who had the disease, to help her realize that

it was manageable. She would have no part of that. She was very, very

resistant. ... She didn't want to talk to anybody else about her frailty. "

Although did not want her classmates and teachers to know, they had

to be advised. That first year with RA, was attending East Junior

High School, where students had to climb stairs in going from class to

class. Carrying a bookbag and gripping a hairbrush no longer were simple

tasks. Arthritic flare-ups can come and go without any particular pattern.

Occasional cortisone injections offered relief for especially bad

spells. In December 2000, Enbrel was prescribed for .

" I just marvel at her ability to cope. The prime example was ... she had to

learn to give herself shots. I didn't know, at 40, if I could have given

myself shots. We worked with her nurse, who was an angel, " Deb said. " She

had to learn to mix the medicine with the solution it came with, assemble

the syringe and put the syringe in her belly. It was traumatic. "

At one point, the nurse invited to give her the shot. After that, she

was able to administer the shot on herself. Deb said she and Ken tried to be

with for moral support during the weekly injections. Treuhaft told

the family Enbrel works at the chemical level, the root level, rather than

just treating the symptoms of the disease.

He told mother and daughter, " It's a good time to be a rheumatologist,

because there is so much good news for people with this disease. There are

so many breakthroughs. "

Soon after was diagnosed, a family friend, a Bartlett,

participated in the national Arthritis Walk. In that event, participants

walk 26 miles. Deb said Bartlett raised more than $7,000 in honor of .

The next year, Deb and decided to team up for the Arthritis Walk in

Toledo.

" I think was a senior in high school. I said, 'Let's go do that.' So

she and I were a team. We raised over $1,000 and went up to Toledo, " Deb

said.

After that, the Toledo coordinator visited Tiffin to see whether enough

interest could be generated for a walk in Tiffin. The first one took place

last year. Deb's fellow teacher, Sue Fuller, also is afflicted with

arthritis. Deb is planning to walk Saturday, but is studying abroad

and won't be able to come home.

corresponded by e-mail about the illness that has altered - but not

dominated - her lifestyle. In spite of the difficulties at the onset of RA,

's mobility and activity have improved considerably since then.

Currently, she is a junior at Allegheny College in Meadville, Pa. A writer

for the school newspaper, said it was fun to be " on the other side of

an interview for once. "

" This semester, I am at the American University in Dubai in the United Arab

Emirates and am studying Middle Eastern studies as a concentration for the

international studies program I am in at Allegheny, " wrote. " A

setback of my illness is that I don't have the freedom to pick up and spend

a month traveling or a spontaneous experience like that. One of my most

helpful medicines is an injection that needs to be refrigerated, and that

ties me down a little bit. It was a pretty big ordeal getting a four-month

supply of drugs before leaving to study abroad. "

The time for outgrowing the disease has passed for . She will continue

to need medication for the rest of her life. had high marks for the

support from her mother, Deb.

" She has been my biggest advocate throughout my illness and has held my hand

through every hard night and rough time. She has put a lot of effort into

this walk and I am grateful to her for her support of not only me but others

dealing with the same condition, " wrote.

Like her mother, has painful memories of her seventh-grade year when

she was diagnosed.

" It was hard because at that time in your life all you really want to do is

fit in. Being different was weird, and so I didn't really tell anyone except

my close friends. Often when I told people, the reaction would be, 'Are you

joking? I thought that was an old person's disease.' I had to quit swimming

on the Y team and stop ballet. As we worked with my rheumatologist and tried

new combinations I slowly got better and was pretty much normal by ninth

grade, " wrote.

She said she was able to swim on the Columbian High School swim team where

breaststroke was her specialty. The buoyancy of the water puts less stress

on the joints than running would do. said she does do moderate

amounts of running when she can work it into her college schedule.

" I still have flare-ups of certain joints that can be pretty painful. ... I

have bad days or bad weeks where I'm generally achy, but for the most part

my disease is under control, " wrote. " The bad days I have had and the

pain I've dealt with have helped me to appreciate my health the rest of the

time. "

With her worst days mostly behind her, is trying to decide when and

where to attend graduate school and continue her Middle Eastern studies. Deb

said her daughter came home from the first year of college and said,

" There's so much misunderstanding of the Middle East. I just have to do

something about that. "

Deb Baker said she wants readers to understand did not let the

disease stop her from doing what she wanted. played three years on

the high school soccer team and swam for four years with the Columbian swim

team, receiving a scholar athlete award as a senior.

" Only once did her doctor say 'no' and that was to go on pointe in ballet

(for fear it would damage her joints). But she continued to dance lyrical

and hip hop through high school, " Deb said.

" I have a lot to be grateful for and I know there are many people worse than

I am, " wrote. " I like the idea of the arthritis walk because not only

does it raise money but it also raises awareness. "

Krupp

Shortly after Krupp's ninth birthday, she started complaining of

pains in her legs. Her mother, Annette Krupp, said the symptoms began in

March.

" We thought it was growing pains, " said. " I spent the summer on the

couch ... I had energy but I couldn't do anything. "

Blood work for rheumatoid arthritis came back negative initially, but

's condition worsened as the doctors tried to pin down her ailment. In

August, and her mother went to a rheumatologist in the Cincinnati

area, who diagnosed juvenile rheumatoid arthritis. At the time, it was most

severe in her legs, but other areas also were affected.

" Every time you'd grab my hand, I'd fall to the ground because it hurt so

bad, " said.

The diagnosis came right at the start of the school year at St. ph in

Tiffin. Annette said 's teachers knew of her condition, but was

hesitant to tell her classmates of the discomfort she was having from the

everyday actions of carrying a bookbag, walking and climbing stairs.

" We were on the highest floor in school, " said.

Annette said she sensed some depression in her daughter, a " Why me? "

attitude. Many people started praying for . Although she enjoyed

sports, decided to play non-competitively and/or to watch and offer

support to her friends on school teams. At the Dance Unlimited studio,

's instructor encouraged her to do as much as she felt able, allowing

her to progress at her own pace.

" I only had to sit down a few times in dance classes. ... I always know when

the joints are going to start hurting because my feet will go like this, "

said, turning her toes outward.

Annette said must wear orthotic inserts in her shoes to offer extra

ankle support. Nodules in the pads keep the bones of the feet aligned.

said she had to break them in gradually before they were comfortable.

She has learned to limit walking barefoot.

" That's one thing she really can't do a lot. She does go barefooted here and

there, but if she goes all day, by the next morning, she's hurting, " Annette

said.

The doctors prescribed methotrexate, a drug commonly used in large doses to

treat leukemia.

The dosage for RA is much smaller. Its drawback is side effects, such as

nausea and stomach aches. still had some swelling in her joints.

" That wasn't helping much, " she said.

Physical therapy helped to loosen 's aching limbs. said she

went three times a week to Star P.T. She said the treatments were not

painful. Her therapist showed her how to use balls to strengthen her hands

and wrists and other exercises for legs and hips.

" She put my feet in that little mini-jacuzzi, " said. " They always had

SpongeBob on (TV). "

Therapy is no longer needed because receives a weekly injection of

Enbrel. Annette gives the injections to her daughter. At this point,

said she would rather not give the injections to herself, but that could

happen in the future.

" She's a nurse, so I'll let her do it, " said.

" She's right at that point in time where it's possible she'll grow out of

it, but you never know until it happens, " Annette said. " There's a chance

she'll have it the rest of her life. "

The doctor said he will gradually reduce the dose of Enbrel to see how

responds. She would need to see him every two weeks for a few months.

If the symptoms do not worsen, the medication can be tapered even more or

terminated. Although the onset of RA was difficult, neither nor

Annette are alarmed about the future. They feel the disease is manageable.

" At first, I couldn't do much, but now, I can do anything that I could do

before, " said.

" At first, it was hard to brush her teeth or brush her hair, open the car

door, or take a cap off, " Annette said. " Now that we have her on a good

medication regimen, everything's been really great. "

In spite of the pain and reduced mobility, and Annette said they have

noticed some positive aspects of the illness. Annette said seems to

be more sensitive to other people who are facing various challenges.

" I liked the way all the people at school would treat me. Like if we were

playing kickball, I'd kick and somebody else would run ... people that I

never even talked to, " said. " Now they don't ask, because they know I

don't need it. "

This year, is in eighth grade at Calvert Catholic Schools, St. ph

campus. She has resumed her jazz dance classes full swing. Annette said

does have to be careful because her bones are more brittle than

others her age. Also, her medication supresses the immune system, making her

more susceptible to infections.

" I think she's been really lucky, " Annette said.

" A lot of the time I don't even think about, 'Can I do this? Will it hurt

me?' The days that I walk too much or jump around too much, my ankles start

to get to me. Then I say, 'Oh, yeah. I can't do any more,' " said.

The mother and daughter said Saturday's event in Tiffin will be their third

Arthritis Walk. The first one they did was in Toledo. They have been

collecting donations from co-workers, classmates, neighbors, family members

and friends.

" Any little bit helps, " Annette said. " Some people give a dollar or two. ...

It all depends on what they can give and what they want to give. "

's older sister, a senior at Calvert High School, is trying to

organize a Calvert team for the 2008 walk. and her class participated

in last year's Relay for Life in honor of , a classmate of 's

with leukemia.

Fact Box

Walking the walk

The Arthritis Walk in Tiffin is set for 10 a.m. this Saturday at

Hedges-Boyer Park. The local event is one of more than 200 arthritis walks

in the United States. Affecting 46 million American adults and 300,000

children, arthritis is the nation's leading cause of disability. s may

take part to honor a loved one with arthritis.

Participants may register online at www.2008arthritiswalktiffin.kintera.org

or immediately prior to the event. s are invited to bring their dogs.

Funds raised from the walk are to be devoted to arthritis research, services

and programs and patient advocacy. The Arthritis Foundation's Web site is

www.arthritis.org. The phone number is (800) 735-0096.