From The Beach Reporter in California:Being diagnosed with juvenile rheumatoid arthritis at the age of 14 hasn’t slowed down Gabriela Guefen (pictured).
Despite her ailment, she not only plays on her high school volleyball team, but she’s an advocate for other young people who suffer from arthritis as well.
Guefen, who was diagnosed in April 2008 after doctors questioned why some of her soccer injuries weren’t healing properly, is one of 300,000 children across America affected by arthritis, with many more undiagnosed.
“When I was first diagnosed, I had no idea that arthritis could affect children,” Guefen, now 16 and a student at Vistamar in El Segundo, said. “I thought that arthritis was just an ‘old people’s’ disease. I was very surprised when I learned that most people with arthritis are under 65 years of age.”
Typically, arthritis victims experience pain and swelling in their knees, ankles, back, neck, hips, wrists, hands and elbows. Although Guefen takes several medications, including small doses of chemotherapy, to manage these symptoms, the treatments often leave her exhausted, dizzy and with stomach pain. However, she said she wants to stay as active as she can and enjoys being a part of the school’s volleyball team, which keeps her motivated to stay well.
“If I know I am playing or practicing that day, then I just focus on feeling good so that I don’t let my team down,” she said.
It is the combination of her ambitious spirit and willingness to follow through that made her dream of starting a soccer camp for children with arthritis come to fruition.
Camp Courage is a free soccer camp for kids with juvenile rheumatoid arthritis.
“The camp is open to kids of all ages and abilities,” she said. “Even if you are not feeling well or you are confined to a wheelchair, we have activities and encourage people to come just so they can meet other kids who have arthritis. Part of staying strong is knowing that you have a support system and that’s what I wanted Camp Courage to provide.
“When I was first diagnosed I didn’t want anyone to know, but after I attended an arthritis conference I realized how many people there were who were my age and who felt the same. I also met a lot of kids who had to stop playing sports or who never had the chance to play but wanted to but couldn’t because they had been diagnosed with arthritis.”
After applying for grants and soliciting sponsorships and donations to fund the camp’s activities, Guefen was able to offer the first camp last winter. The December 2008 camp attracted 13 campers. This year the camp took place in September, in which Guefen nearly doubled her participation and attracted 23 campers.
“I would love to one day have hundreds of campers and turn Camp Courage into a nonprofit where we can offer not just a soccer camp but a variety of activities,” she said.Currently, Guefen said that this is the best she has felt since being diagnosed. Besides the high school volleyball team and Camp Courage, Guefen is also a regular volunteer and interns for the Arthritis Foundation.
Her involvement with the Arthritis Foundation has sent her to Washington, D.C., where she and other children with arthritis have lobbied on Capitol Hill to have a bill passed that would offer more services and opportunities for children with arthritis.
Through her work with the Arthritis Foundation, Guefen learned that there is a shortage of pediatric rheumatologists in this country, with seven states not having any at all.
“This means that children have to travel far for treatment, if they are lucky enough to be diagnosed properly in a timely manner,” Guefen said.
Guefen, who plans to continue her internship with the Arthritis Foundation has already received a broad education about her disease and its treatments, from her team of health-care providers, led by Dr. Bracha Shaham, a pediatric rheumatologist at Childrens Hospital Los Angeles. Not only does Guefen take three different types of medications and knows the details about each one, but she also gives herself injections, and said she would draw her own blood if that was allowed.
“A big part of having arthritis is being involved in your own care, and knowing how to help yourself feel better,” Guefen said.
