Joy Fawcett has played for the U.S. Women’s soccer team in three Olympics – 1996 in Atlanta, 2000 in Sydney and 2004 in Athens – and was on the field every minute. Each time, the team won a medal - one silver and two gold. She is the mother of three girls. She has rheumatoid arthritis.
Joy is also an enthusiastic spokesperson for the new GeneRAtions program run by Centocor Corp., the makers of Remicade. Last week, I had the opportunity to speak to her about her career as an athlete, Rheumatoid Arthritis and the GeneRAtions program.
Introduced to soccer at an early age by her older siblings, Joy fell in love with the sport and developed into what many considered the best defender in the world. Although she has played in three World Cups and three Olympics, she has a special place in her heart for her first Olympics, the 1996 Atlanta Games, where playing in her own country with her whole family watching added an extra thrill to winning the gold.
By 2001-2002, just as she was preparing to go into training for the 2003 World Cup, Joy’s fingers started to swell and be painful, she’d be fatigued and increasingly sore the day after a game. “Luckily, I had a good team doctor who sent me to a rheumatologist,” Joy said. She considers herself equally lucky that she was diagnosed and treated early, emphasizing the importance of early detection and treatment “so your joints don’t generate more than they need to.” These days, Joy’s RA has progressed past her fingers and wrists and into her knees, but she is taking a combination of Remicade and Methotrexate and her disease is fairly well controlled.
According to Brian Kenney, Director of Corporate Communications at Centocor, it became apparent to the company that there was a great knowledge gap about rheumatoid arthritis in the public, the media and people living with the disease. Centocor commissioned a large study, which was conducted by Manhattan Research in the first six months of 2008. The study interviewed over 1,000 people living with RA and 300 physicians who had been treating the disease for 10 years or less, 11-20 years and 21 years or more. The results gave a detailed picture of the physical and mental challenges involved in living with RA and formed the foundation for the development of the GeneRAtions initiative.
- Two out of three people surveyed believed friends and family underestimate the impact of RA.
- More than 90 percent of people with RA surveyed reported that their disease interfered with their work in the last three months, illustrating how Rheumatoid Arthritis can impede many facets of people’s lives.
- More than half of all respondents felt their doctors do not fully understand the impact of RA on their patients.
Adjusting to the disease can be difficult and “[w]hen you feel fatigued and the soreness and the pain, many people try to explain it away … and [that] can be depressing,” Joy said. “I don’t think I even dealt with it … I blocked it.” Eventually, she started dealing with it when, “It hit me hard when I couldn’t do my kids hair; I’d go home and I couldn’t do things, normal everyday things, that you look forward to do. That’s what I found the hardest.”
Not surprisingly, Joy emphasizes the importance of physical activity to keep the joints moving and she still plays soccer recreationally. However, any exercise is good, she said, “even if it’s just a walk” because it “helps you do the daily stuff.”
Joy chose to become a paid spokesperson for the GeneRAtions program because she wants “to get the message out there … so that people can learn about these symptoms, [can] go see a rheumatologist and get diagnosed early… [and to] help family members understand what we’re dealing with.” As well, she said it’s very important to communicate well with your doctor, to tell him/her how you’re feeling and to ask questions.
Joy said: “It’s good to bring it out in the open so people can talk about it and … feel good that you are not alone.”
You can read more of Lene’s writing on The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.