Growing Up With JRA: A Story

[Guest guest]

Profile of Danilo DaSilva: A young man on the move

By Birks

At 19, getting a new set of wheels is always a big deal. For Danilo

daSilva, it's even more. Da Silva has Juvenile Rheumatoid Arthritis

(JRA) and without his new Ranger X Storm wheelchair, he is not going

far. And that's not like him. Since he was diagnosed at age 3 in his

native country, Brazil, da Silva has spent the last 16 years traveling

across the United States for the medical treatments he needs.

Today, da Silva, a psychology student at the University of Missouri,

whisks past his colleagues in a black wheelchair on the way to class.

But it was not always so straight ahead. While his face looks young,

still brushed with peach fuzz, his dark brown eyes carry the worry of an

older man. When da Silva was diagnosed at 3, he was in a Brazilian

hospital hospital with a high fever and severe heart inflammation.

JRA is not always so severe. The symptoms vary from child to child and

the disease can affect internal organs as well as joints. The Arthritis

Foundation reports that the disease may be caused by abnormalities of

the immune system. JRA has four major symptoms: joint inflammation,

tendon, ligament and muscle contraction, joint degeneration and altered

growth. About 285,000 Americans have JRA, including about 4,000 in

Missouri, according to the Arthritis Foundation.

For da Silva, despite an early diagnosis and aggressive treatment, JRA

stunted all of his bones and affected all of his joints. The disease

permanently damaged his hips and knees. Despite all his medical setback,

he keeps going. " My symptoms are mild now, but they are still affecting

me, " da Silva said with a slight Portuguese accent. " My main problems

now are stiffness, clicking and popping of joints, and pain. Mornings

are especially tough, but things generally improve throughout the day. "

COMING TO COLUMBIA

Da Silva's relocation from Brazil to Columbia, Missouri, was not as long

a trek as one might expect. Da Silva was in contact with Dr. T.

Cassidy, an internationally prominent pediatric rheumatologist, for

years. When da Silva was first diagnosed in 1983, the severity of his

JRA prompted his Brazilian physician to recommend Dr. Cassidy who was

then practicing medicine in Ann Arbor, MI. For the next 16 years, every

six months, da Silva and his father would visit Cassidy for two to four

weeks for treatment. At the end of each visit, da Silva would take home

a video of the customized physical and occupational therapy routines to

follow, along with six months of prescriptions and medicines. However,

da Silva did not come to MU just to be close to Cassidy. From his visits

here, da Silva discovered Columbia and MU were accessible to disabled

students and he liked MU's psychology department.

Da Silva says he has become a shrewd observer of disabled access; born

from surmounting obstacles in Brazil. " There were few curb cuts, ramps,

elevators or wheelchair-accessible buses, " da Silva said. Even inside

buildings in Brazil, getting around wasn't easy. " In high school I

needed a friend or the school custodian to push me up the steep

wheelchair ramp leading to the second-floor classrooms, " da Silva said.

Not so in Columbia. " Almost every building is wheelchair accessible on

campus, " da Silva said. " There are very few that aren't. There's a lot

more political awareness about disabilities here, " da Silva said.

At home, da Silva would like to see Brazil's politicians sponsor more ad

campaigns to increase public awareness about disabilities, such as

arthritis. " In Brazil you have to vote, " da Silva said. " If you don't

vote, you have to justify why you missed voting or you can't get a

government job or documents, such as a passport. " But the Brazilian

government has not made it easy for adults with disabilities to vote.

" There was one woman who wanted to vote, but she couldn't get to the

second story of the building because she was in a wheelchair, " da Silva

said. " The local people were very willing to help, so they lifted her up

the stairs in her chair. "

Along with Brazil's government, da Silva puts part of the blame on the

Brazilian news media, which fail to pressure local and national

governments to help persons with disabilities, he says. Instead of

proposing constructive public policy, the news media covers

disabilities only by reporting success stories, such as the disabled

woman who got to vote. Without government and press support, da Silva

says Brazil's disabled are left to fight their own battles. Da Silva

explained that in 1997 at the university he attended in Brazil, his

sociology classroom was on the second floor, which was not wheelchair

accessible. To get to class, da Silva was forced to ask someone to carry

him up the stairs in his manual wheelchair, which alone weighed about 45

pounds. When he asked the sociology professor to change the location, da

Silva explained he opened up a hornet's nest of problems. " I ended up

starting this huge argument between the Psychology Department

co-ordinator and the sociology coordinator, who was also my professor, "

da Silva said.

The Brazilian university's Arts & Science Department told da Silva the

sociology professor needed to talk to the head of the Psychology

Department to make the change. " But they wouldn't speak to each other so

I had to be the middleman, " da Silva said. Da Silva noted another

student in the class, who also used a wheelchair, remained silent while

her friends carried her up the stairs in her wheelchair. " I said it was

better to fight, " da Silva said. " But people don't fight. The other

student didn't speak with the teacher. She wasn't going to take any

initiative. " Finally, da Silva got what he wanted. His sociology class

was moved to the psychology building.

Eighteen months after the incident da Silva gives persons with JRA the

following advice: " Don't stop if people get angry when you demand your

rights, " da Silva said. " And don't give up. "

GROWING UP

Living with arthritis, da Silva explains, required some child and

adolescent sacrifices. To spend the night at a friend's house, da Silva

needed a family member to help him up any stairs and to get ready for

bed and dressed again the next morning. At times, da Silva revolted

against the confines of his disability. On one of da Silva's mid-1990s

visits to Columbia to see Dr. Cassidy, he and his brother went to a

mall. An impromptu race between his brother with a shopping cart and da

Silva in a wheelchair led to a tumble. A brief moment of spontaneity

cost da Silva what little freedom he had left.

" When I broke my leg, and was in a cast, there was a lot of muscle

atrophy, " da Silva said. " I still have not regained much strength in my

leg since then. " He was forced to use a wheelchair all the time. Before

the accident, da Silva only used his wheelchair to travel longer

distances.

HIS LIFE TODAY

To compensate for his current inability to walk, da Silva goes to

physical therapy three times a week. On Wednesdays, he visits Rusk

Rehabilitation Center for whirlpool exercises. On Tuesdays and

Thursdays, he goes to University Hospitals and Clinics to exercise with

a rolling walker. " I can walk about 200 yards often with no stops, " da

Silva said. Da Silva realizes that exercise is necessary for adults or

children with arthritis so they can maintain physical strength,

flexibility, mobility and independence. On some of his off days, da

Silva works out in his room at Graham Hall residence, pumping dumbbells

40 times per arm to strengthen his biceps and shoulders. Next, he stands

and sits several times to condition his leg muscles.

With his move to Columbia in the summer of 1998, da Silva gained his

independence, but it was hard won. " In 1997, I depended on my family to

help me do practically everything, " da Silva said. " They helped me get

ready for the day and get ready for bed. They helped me with stairs and

drove me places. " In Columbia, he has a personal assistant to help him.

" I can get ready for the day myself, " da Silva said, " but it will take

me almost two hours. If I get help it takes me less than an hour. "

However, da Silva refuses to let JRA block his goals. " It has affected

how I get dressed, my ability to participate in sports and recreational

activities, and to drive, but I have not let it affect my achieving my

goals or my studies, " da Silva said. Da Silva takes his own course notes

and he is grateful that all of his classes are wheelchair accessible.

In addition to taking a full course load, da Silva sits on MU's

publicity committee for Disability Awareness Week, which will take place

April 5-11 this year. " I usually attend meetings twice a month, " da

Silva said. " We do things like set up table tents and distribute these

to all of the dining halls on campus, and Brady. " Da Silva

acknowledges that JRA has challenged him physically and mentally for the

past 16 years. He admits he sometimes feels depressed, helpless,

hopeless and isolated. " As the years go by, it doesn't help to do those

things, " da Silva said. " I try not to think of such things and get on

with what I have to do. " Alternatively, he looks at his accomplishments.

" The toughest thing I've done was to prove to my family and friends that

I could move here to go to university, " da Silva said.

Initially da Silva's family didn't want him to attend MU because it was

so far away from home. He said his family were especially afraid he

would not be able to cope with the winters here. " It's been good to show

them otherwise, " da Silva said. " By hearing that they didn't want me to

move here I was more willing to prove them wrong. " Now my family have

changed their tune and they are saying 'Good for you', " da Silva said

with a smile. But they better adjust their binoculars. After da Silva

graduates from MU he plans to keep on moving. His next goal is a

graduate degree in forensic psychology.