[ 294,000 Children ] With Juvenile Arthritis, Children Try To Live Full, Pain-Free Lives

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[ 294,000 Children ]

With Juvenile Arthritis, Children Try To Live Full, Pain-Free Lives

http://www.theledger.com/article/20100509/NEWS/5095023/1021?p=all & tc=pgall

Published: Sunday, May 9, 2010 at 12:01 a.m.

When most people think of a person with arthritis, the image of someone

older, moving slowly due to stiff, sore, or damaged joints most likely comes

to mind.

This is not far off the mark, especially in Florida where we have an older

population and where it is estimated almost a quarter of all adults in the

state have one or more of the 100 types of arthritis.

However, there are young Polk County residents who challenge popular

perceptions of what someone with arthritis looks like.

Meet high-energy siblings 7-year-old Jake Sloan and 5-year-old Hannah Sloan

from Lakeland.

These kids are, for the most part, normal, active, fun-loving children, but

they both have juvenile rheumatoid arthritis.

Juvenile arthritis affects an estimated 294,000 children in the United

States, according to a 2007 study conducted by the Centers for Disease

Control and Prevention.

Arthritis is not just an " old person's " disease. Juvenile arthritis comes in

several forms and is considered an autoimmune disease where the child's body

mistakenly attacks itself. Symptoms often include hot, inflamed and painful

joints, and in some cases inflammation of the muscles and internal organs.

According to the Centers for Disease Control and Prevention, an average of

50 children under age 15 die from arthritis and other rheumatic conditions

each year. Shortened life spans are not necessarily a huge concern, but

deformity and disability can be.

NO KNOWN CAUSE AND NO CURE

Hannah Sloan was diagnosed with juvenile arthritis three years ago when she

was 2 1/2. Jake was diagnosed in March. Their mother, 37-year-old Heidi

Sloan, is no stranger to arthritis, having been diagnosed herself with

juvenile arthritis at age 3. Heidi's mother has also had arthritis since she

was 16.

Despite such family history in the Sloans' case, juvenile arthritis is not

generally a hereditary condition, according to Brunson, nurse

practitioner with the Pediatric Rheumatology clinic at Shands Hospital at

University of Florida in Gainesville.

" There is no known cause (of juvenile arthritis), but it is thought that

genetics can make someone predisposed to developing the condition once a

trigger, such as a virus or an environmental factor, sets the immune system

off. Then it's a downward spiral from there, " she said.

Another Lakeland resident living with juvenile arthritis is 16-year-old

Hunter Brown. Diagnosed in kindergarten, Hunter's condition has evolved over

the past 10 years to include five types of juvenile arthritis. In addition

to the juvenile arthritis, Hunter has vasculitis, dermatomyositis, lupus and

fibromyalgia. Hunter also has osteoporosis as a side effect from the

steroids she takes as part of her treatment regimen.

Juvenile arthritis can be diagnosed later in childhood, as was the case for

Auburndale teen Krystal Lanier.

Krystal, now 19 and a student at Polk State College, was diagnosed at age 16

after complaining of swollen hands that made it difficult for her to play

her violin.

Chronic pain is the norm for these children, and as a result they don't tend

to complain until the pain is very severe.

" People just don't get it. Because it doesn't have outwardly visible

effects, adults don't seem to believe there is anything wrong with the child

because they can't 'see' it, " Heidi Sloan said.

The unpredictable nature of the disease can cause a strain on friendships.

Sloan has had to pull out of commitments or play dates because one of her

children is experiencing a flare-up in their symptoms.

These flares are managed by a combination of pain relievers, comfort

measures like heat packs and hot baths, and at times visits to the hospital.

Hannah receives weekly shots of Enbrel, an arthritis drug. Jake is on weekly

shots of Methotrexate, a chemotherapy drug that has benefits for arthritis

sufferers. The shots are stressful for the children and strain the family

finances, parents say.

In many cases, drugs used to treat juvenile arthritis are immunosuppressants

so parents have to be vigilant about exposure to illnesses. Something as

simple as a cold or a sore throat to anyone else could spell deterioration

and a major flare in symptoms for a child with juvenile arthritis.

THE PAIN

There is no typical pattern for juvenile arthritis patients. The disease can

affect different children in different ways and can affect the same child in

different ways.

" I guess with having little kids with JRA, every day is different, and it

fluctuates throughout the day. You never know how they are going to wake up.

They could wake up and go to school and be fine, and I could get a phone

call during the day to tell me Hannah has a 103 fever.

" Hannah has systemic juvenile rheumatoid arthritis, which affects more than

just her joints. Fever is indicative of a flare, " Sloan said.

Despite what can be at times a limiting condition, Sloan is determined her

children will live life as close to normal as possible.

" I don't want arthritis to be the No. 1 thing they think about their lives

or for it to be their focus. I want them to be who they are. I won't let

this disease control our lives, " she said.

Physical activity can help kids manage pain.

Sloan encourages her children to be as active as possible. Jake is a cub

scout, Hannah takes dance classes and both children attend tae kwon do and

recently attained their yellow belts.

The Sloans are a very outdoorsy family, camping regularly and enjoying

hunting trips at Heidi's parents' home in Tennessee.

Being active is part of managing the disease to keep the body moving and

prevent joint damage. But, there are times when the children miss out on

some of their activities because they are in too much pain.

Amy Brown, Hunter's mother, said Hunter's arthritis progressed quickly and

severely and as a result completely changed her life.

At 6, when she was diagnosed, Hunter was a typical elementary school child

and very active. Once her symptoms started and she was diagnosed four months

later with JRA, things rapidly changed.

Hunter embarked on a long journey involving many doctors' visits, trial and

error with medication combinations and hospital stays. Hunter sees many of

the pediatric specialists at All Children's Hospital in St. sburg.

" It kind of shut everything down. She can't be out in the sun, can't play

basketball like she wants. It's a different lifestyle, a change in your

outlook, " Brown said.

Brown is keen to point out that while Hunter cannot participate in some of

the typical teen activities, she still has the dreams any of her peers have.

" She wants to be a surgeon, " she said.

As she looked tenderly at her daughter, Brown said, " It's limiting in some

ways, but not the most important way. It doesn't limit your dreams. "

It has been a tough year for Hunter, marked by bad flares in her condition.

This has made attending school difficult and contributed to the decision

that Hunter take her academic classes online via the Florida Virtual School.

Hunter takes electives only at Lakeland High School.

Hunter says there are things she can do to help manage her pain.

" I can distract myself sometimes by doing something I enjoy, but as soon as

I stop, it hurts 10 times more. "

FEW PEDIATRIC RHEUMATOLOGISTS

Ward says there is a nationwide shortage of pediatric rheumatologists, but

Florida is fortunate to have five.

" Many kids with juvenile arthritis in other states have to make plane

journeys to see their pediatric rheumatologist, " he said.

Shands Hospital in Gainesville has two board-certified pediatric

rheumatologists, and their clinic sees about 50 to 60 children a week. All

Children's Hospital in St. sburg also has a pediatric rheumatologist.

NETWORKING & SUPPORT

Heidi Sloan and Amy Brown, along with their children, are very active in the

Arthritis Foundation.

" I feel like I can't work because my children are chronically ill. I never

go through a week when I'm not going to the doctor or have something going

on (with my children's arthritis) and I feel like if I can't work I can give

my time to an organization which, eventually, will help my children.

Sloan is a member of the Arthritis Foundation's " Mom Squad " and is

Mother-Ambassador for Polk County - a contact person for any family in the

county facing a new diagnosis of juvenile arthritis.

Brown said one of the great benefits the Arthritis Foundation has been able

to offer families with children who have juvenile arthritis is Camp Boggy

Creek, a camp for 7- to 16-year-olds, with staff including doctors and

nurses.

This allows arthritis kids to have the summer camp experience with the

security of trained medical professionals on site.

Tony Ward, community development director with the Arthritis Foundation in

Orlando, says there are an estimated 1,700 children in Florida with juvenile

arthritis.

Sloan and Brown served as co-chairs for the Lakeland Arthritis Walk that

takes place annually.

This year's walk was Saturday. Sloan and her family attend the Orlando

arthritis walk also. They walk to raise funds and awareness, but also to

network with other juvenile arthritis families.

" Hannah has said, 'Wow Mom, they have arthritis just like me,' and it's neat

for them to make that instant connection. "

TO LEARN MORE Further Information:

www.arthritis.org for information on arthritis and juvenile arthritis.

www.letsmovetogether.org for help and advice on how to keep active with

arthritis

www.facebook.com/arthursangels to connect with other juvenile arthritis

families