Deal of the Day
news
|
Surviving the stigma of invisible disabilities Published: June 24, 2009  Diana Harris was diagnosed with the condition in her 40s. By Amanda Galloway Diana Harris has a lot to live for. She is a proud mother of two girls and a blossoming artist who dabbles in watercolors and oils, while creating beautiful and eclectic bird houses and wind chimes that decorate her house near Bon Air. You may notice the brace around her hand and wonder if she is recovering from one too many late nights at the office, typing away at the computer. Yet, if you look closer, a small medical alert bracelet, wrapped around her watch, keys you in to a much more serious condition. Harris, 56, has an incurable genetic condition known as Ehlers-Danlos Syndrome (EDS) that affects nearly every part of her body on a daily basis. Aside from the braces that stabilize her hand and knee, there are no symptoms that would indicate that she has a life threatening condition. Ehlers-Danlos Syndrome, which was named after the two European doctors who discovered it, is a genetic disorder caused by a defect in collagen, a protein that builds connective tissue. As a result, people with EDS are highly predisposed toward dislocations, subluxations, sprains, and fractures, Harris explained. EDS is perhaps best known for the hyper-mobility that often accompanies it, Dr. Howard Levy of John Hopkins University explained. Such symptoms are similar to those found in contortionists, and vary in the degrees to which they affect someone with EDS. Such hyper-mobility can lead to musculoskeletal complications, and in turn lead to chronic pain, Levy said. Due to the lack of public knowledge and the massive number of symptoms that accompany EDS, the condition is commonly under diagnosed or misdiagnosed. “I was not diagnosed until I was in my forties,” Harris explained. “Before that, I was told I had MS and arthritis. My family said I was a complainer, and I was worried I was a hypochondriac.” After years of frustrating visits with doctors failing to understand her symptoms, Harris did her own research and presented the idea that she had EDS to her doctor. “The doctors verified my condition and said I had Ehlers-Danlos. It was a huge relief. I finally knew I was not just a big complainer, but my problems finally had a name. But at the same time, I was diagnosed with something that had no cure. I still did not really care, because it finally had a name,” Harris said. Since then, Harris has had more than fifteen surgeries related to EDS. It affects her allergies, her skin, her teeth and eyes, and her endocrine, gastrointestinal, musculoskeletal, and neurological systems, Virginia Family Physicians confirmed. Harris stresses that due to the lack of public awareness of her condition, one of her greatest joys is finding others diagnosed with EDS. As a result, she created the Richmond-Central Virginia support group for those with EDS, which now has more than 60 members. “We’ve become almost a family because we know and understand each other so well in a way that a completely healthy person cannot understand,” she said. Despite the severity of EDS, it lacks the outward, physical symptoms that characterize other conditions, and many EDS sufferers deal with a stigma associated with other invisible disabilities. Harris’ daughter, Sara, who also has EDS, fully understands the emotional conflict that accompanies diseases with no external symptoms. While an undergraduate student at JMU, the school newspaper attacked the widespread use of handicapped parking permits by students. “My car has a handicapped tag, and yes, I walk to it,” Sara wrote in response to the article. “I do so proudly because I have endured years of physical therapy and several surgeries to maintain such mobility…I’ve gotten the looks, the rolling eyes. Perfect strangers…have asked if I feel guilty parking in handicapped spots,” she wrote. “I am not looking for pity. I am looking for respect for myself and others with invisible disabilities.” Diana Harris uses her daughter’s story not only as an example to fight against stereotypes of the invisibly disabled, but to help promote knowledge and understanding for EDS. The symbol used to represent EDS in medical journals is the zebra, Harris explained. Doctors are often taught in medical school that “when you hear hooves, think horses, not zebras.” “Well, at one time, EDS was thought to occur in one in fifty thousand births.” Harris said, “Now, it may be as common as one in fifteen hundred.” “My only hope is that by reaching out to the community, we can help to diagnose someone. Maybe a mother will realize her daughter’s flexibility is not normal. Or an adult will realize their years of suffering finally has a name,” Harris said.
|
© Copyright Media General Communications Holdings, LLC.
Main Media Partners: Richmond.com | Goochland Gazette | Mechanicsville Local | Cumberland Today | Powhatan Today | Virginia Newspapers
