Re: Arthritis is family's focus

[Guest guest]

What a great article!! I sure hope they get the support that is

needed!!!

>

> Arthritis is family's focus

> Sisters, mom advocate for prevention, control and cure

> http://www.record-eagle.com/wellbeing/local_story_094095652.html?

keyword=topstory

>

> Published: April 03, 2008 09:56 am

>

> BENZONIA -- watched as her little sister lived with

the pain

> of juvenile arthritis.

> , 12, knew how Olivia's hands and knees ached and how the

disease

> kept her 8-year-old sister indoors when winter arrived and the

days grew too

> cold. understood arthritis wasn't only an older person's

disease.

>

> Then, around Christmas, doctors told the pain she felt

when she

> chewed gum was the result of juvenile rheumatoid arthritis, which

caused

> deterioration of the bone in her jaw.

>

> " I was kind of glad I got it, because my sister could teach me all

the

> ropes, " she said.

>

> 's condition is one more reason the family of

Benzonia remains

> committed to arthritis causes. The two girls and their mother

> travelled to Washington, D.C. in late February to rally support

among

> Michigan's elected leaders for the proposed Arthritis Prevention,

Control

> and Cure Act.

>

> The family learned Olivia, the youngest of three siblings, had

psoriatic

> arthritis when she was a toddler. She manages the condition by

taking

> numerous pills daily and making routine medical trips to Ann Arbor.

> " In the winter, I don't go out for recess at all, " Olivia said.

>

> underwent jaw surgery in March and expects more

procedures. Older

> brother Hunter, 14, who wants to be an architect and loves

snowmobiling, was

> tested for arthritis. His results were inconclusive, but rheumatoid

> arthritis runs in the family's genes, said.

>

> About 300,000 children in the United States have a form of juvenile

> arthritis and 46 million adults have been diagnosed with

arthritis, said

> Dawn Hafeli, vice president for programs with the Arthritis

Foundation

> Michigan Chapter.

>

> The foundation wants legislators to pass a proposed bill that

would increase

> arthritis research, expand public health initiatives and encourage

more

> doctors to pursue pediatric rheumatology.

>

> said her daughters weren't at all shy when they had the

chance to

> share their stories with some of the state's leaders.

>

> The girls flipped through a book of members of Congress and

pointed out the

> Michigan officials they targeted during their capitol visit.

>

> Among the list: Rep. Pete Hoekstra, Rep. Bart Stupak and Rep.

Dingell,

> who chairs the Committee on Energy and Commerce where the arthritis

> legislation sits in a health subcommittee.

>

> Hafeli said champions of the bill are still working for support

from the

> three congressman. It helps when constituent families advocate,

she said.

>

> " (We) try to put a face to arthritis, so that it is not minor

aches and

> pains. It is a real person out there, " Hafeli said.

>

> About 400 people from 40 states participated in the foundation's

recent

> advocacy blitz.

>

> " Most people don't really know that kids can get arthritis, " said

Olivia.

>

> hopes the family's efforts will make a difference.

>

> " Just getting this bill passed and getting more research ... maybe

this

> generation will see a cure, " she said.

>

> Local residents can get involved by joining in the 2008 Arthritis

Walk at 10

> a.m. Saturday, May 17, at the Holiday Inn West Bay on East Front

Street in

> Traverse City.

>