Juvenile Rheumatoid Arthritis Victim Creates Culver Soccer Camp
November 5, 2009
Gabriela Guefen can’t play her beloved sport of soccer at the moment. But, that doesn’t mean the 16-year-old is not applying the rules of that game to her life: when heading towards your goal, move around obstacles, change course if you have to, make constant adjustments to your strategy.
To that end, when Gabriela was diagnosed with Juvenile Rheumatoid Arthritis at the age of 14 and told that she will need to avoid contact sports, she decided to join the volleyball team instead, and got involved with other extracurricular activities like Model United Nations and Readers Are Leaders (reading to kids at a nearby elementary school).
Gabe (pronounced Gabby, as she is known to family and friends) established a free soccer camp in Culver City, called Camp Courage, for kids with arthritis and their siblings, and spent countless hours applying for grants and soliciting sponsorships and donations to fund and expand the camp’s activities.
When Gabe was faced with skepticism that her disease required special accommodations in class (like extra time on tests and homework when she was suffering from pain), she decided to take action. First, she switched schools, enrolling at Vistamar School in El Segundo, where small classes and a nurturing environment were just what she needed. Then, she joined the Arthritis Foundation, a national organization that educates the public and advocates for those with arthritis. In June of 2009, Gabe took part in the organization’s Arthritis Walk, raising more than $25,000.
She also participated in the organization’s special Kids Advocacy Summit in Washington D.C. earlier this year where she urged lawmakers to support the Arthritis Prevention Control & Cure Act of 2009. Being fluent in Spanish, thanks to her Mexican-born father, Gabe hopes to use her language skills for more public education in coming years.
“When I was first diagnosed, I had no idea that arthritis could affect children,” said Gabe. “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.” In fact, Gabe is one of 300,000 children across America affected by arthritis (with many more undiagnosed). She has pain and swelling in her knees, ankles, back, neck, hips, wrists, hands and elbows. The medications she takes to manage these symptoms often leave her exhausted, dizzy, and with stomach pain.
Her soccer playing days may be behind her, but Gabe now has her eyes on a new goal: becoming a pediatric rheumatologist. Through her work with the Arthritis Foundation, Gabe 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.
Gabe’s training as a pediatric rheumatologist has already begun, with her learning about the disease and its treatments, thanks to her team of healthcare providers, led by Dr. Bracha Shaham, a pediatric rheumatologist at Childrens Hospital Los Angeles. Gabe takes three different types of medications and knows by heart details about each one. She gives herself her own injections, and 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,” Gabriela said.
Gabriela Guefen lives in the Beverlywood section of Los Angeles with her parents and a younger sister.
Vistamar School, located at 737 Hawaii Street in El Segundo, provides an engaging academic program that empowers students to excel in higher education and in life. The curriculum, emphasizing global perspectives (including four years of Mandarin Chinese and Heritage Spanish), prepares students to embrace lives of learning, integrity, and purpose. For more information about Vistamar, visit www.vistamarschool.org.