Just getting an accurate diagnosis can be a tremendous challenge for people living with the connective tissue disorders that fall under the Ehlers-Danlos Syndrome umbrella.
Common misdiagnoses include fibromyalgia, arthritis, and lupus. Treatment for these diseases does not relieve symptoms of EDS, and in some cases, exacerbates the condition.
Even worse, people suffering with EDS may be dismissed entirely.
An online EDS research group reports that EDS symptoms are often attributed to hypochondria, “growing pains,” stress, and depression. Not only are these patients not receiving treatment that could make their symptoms more manageable, they are being told that their complaints are not valid or all in their head.
Currently, the estimate for prevalence of all forms of EDS is one case per 2,500 people, but rare disease experts believe the actual figure is considerably higher, having been obscured by rampant cases of misdiagnosis.
A young woman recently shared the story of her EDS journey on a rare disease website. Like many people with EDS, an early misdiagnosis led to an unnecessary surgery, which caused even more pain and complications.
“I experienced a level of pain I didn’t know existed at that time.”
From her first dislocation at the age of 19 to her diagnosis of hypermobility syndrome, the most common type of Ehlers-Danlos, her life was a series of increasingly frustrating and painful procedures.
She tried numerous doctors and experts, even meeting with alternative practitioners like acupuncturists. She underwent corticosteroid injections in her tailbone and radiofrequency ablation, all to no avail.
Finally getting a correct diagnosis was life-changing. Though she was relieved to know exactly what her disorder was, she was also disappointed to learn that there is no cure. She could have let this news send her into a spiral of self-pity and depression. After all, she had just been told that she would probably have to live with chronic pain and dislocated joints for the rest of her life. She had once been a vibrant young woman who loved activities like dancing, and her EDS diagnosis threatened to prevent her from pursuing her passion.
Instead, she chose to rise above the fear and uncertainty.
“Every single day when I wake up, I make a choice to spend the day to the best of my ability,” she says. “Not disability.”
She found a sense of peace and control once she accepted that her body worked differently than others. She began exploring various methods of pain control as well as mental and emotional coping mechanisms. She learned to take life at her own pace and to stop comparing herself to others, because she realized her Ehlers-Danlos Syndrome diagnosis made her unique.
Today, her positive attitude serves as an inspiration to the EDS community.