2009 Annual Report - Arthritis Foundation

Personal Perspectives
Bethany
Demas
Bethany Demas is a sweet, full-of-life,
open-hearted pre-teen. At the age of 12, she
did what other girls her age love to do: met
with friends at the skating rink, went to
school dances, texted her BFF with all the
latest acronyms (LOL), walked around the
neighborhood to visit friends, and played video games.
She led a normal life up until about a year ago. Now each of these activities comes with a price. She
has recently been diagnosed with Polyarticular Juvenile Idiopathic Rheumatoid Arthritis (PJRA).
For those of you unfamiliar with this disease, it has no known cure, is extremely painful and
changes the way you think about every movement.
Polyarticular arthritis is normally a diagnosis of arthritis aecting more than 5 joints. Bethany has
well over 20 joints aected at any given time. Some days she couldn’t get out of bed without
assistance, get dressed independently, or button her clothes. Her parents had to be careful to
monitor her activities from day to day, as overdoing it one day causes grief and pain for several days
later. It is a dicult balance between letting Beth live a normal childhood lled with activities, and
protecting her from the impacts to her body from doing everything a normal child does. Bethany's
dad said, "seeing a child, your child, endure so much pain is like nothing we have ever experienced.”
Now at 13, on a weekly medical regimen that includes 48 pills and injections, the road to normalcy
may be within reach. Bethany is such a strong girl. She is the one that gives us hope, and she is the
one that is making the dierence daily between allowing the disease to take over or to ght back.
She is the one who ghts through the pain and makes the conscious decisions to overpower it every
day. Aer months of treatments and doses, her life now mimics that of her friends. With careful
management, she is able to do the things a normal teenager should be doing.
She has since joined the 7th Grade Sand Springs Cheer Team. At rst, her family felt this might be
too much for her to handle; she again proved to be strong. Not only did her cheer team take 1st
place in their division at their rst competition, but they also won 1st Place Junior Grand
Champions at the event. She was able to showcase the fact that she is a strong survivor to over 1000
spectators. e road is far from over, but there is hope for the hundreds of thousands of children
dealing with similar situations.
Letters from the 2009 National Juvenile Arthritis Conference in Houston, Texas
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