Unfortunately, CNN.com's "What is Ehlers-Danlos Syndrome?" fails to provide a clear, current, comprehensive portrait of the disease and its sufferers. Instead, readers were treated to some ominously black and white photos of a "bendy person" and her "stretchy skin."
Rather than interviewing numerous physicians, patients, and families, CNN Medical Correspondent Elizabeth Cohen relied on one patient, and one physician, Salman Kirmani, MBBS, a pediatric endocrinologist/geneticist, who is cast as "an expert on EDS at the Mayo Clinic," even though we could not find Kirmani listed ANYWHERE as an author of ANY EDS-related research.
While most of the article was the standard discussion outlining the history, the variations, and the rarity of the disease, some of Kirmani's statements, and CNN's interpretation of his statements, sparked the INTENSE ire of Ehlers-Danlos sufferers. YOU BLEW IT, CNN! Please fix it!
For your convenience, we have bracketed our comments inside the CNN blockquote:
Unfortunately, there is no cure, but Kirmani recommends seeking treatment from a team who knows and understands EDS. [Since so few physicians "know and understand EDS, does Kirmani realize that a team is almost impossible to assemble outside of a major, elite teaching hospital.]
“Even though we have no cure, we can certainly manage the complications quite adequately,” he said. [We know of few EDS sufferers who have experienced having their complications managed "adequately," let alone "quite adequately."]
Managing the symptoms often involves physical therapy to strengthen muscles and over-the-counter drugs for pain. [Many EDS patients cannot tolerate standard physical therapy and mobility issues make it difficult to travel to and from multiple weekly appointments. EDS sufferers were not polite in there reaction to "over-the-counter drugs" providing significant relief from chronic pain.]Ultimately, CNN's article does more harm than good in that it perpetuates the misconception that Ehlers-Danlos Syndrome is simply a benign hyper-mobility disorder. Worse, because the article was picked up by countless television news partners, the effect of this disinformation will take a long time to erase.
Patients with EDS may be limited by their fragile skin or bone tissue – Kirmani and his team tell patients to avoid high-risk activities - yet the majority have a normal life expectancy. [Overall, EDS patients may have a near-normal life expectancy. But, patients with the vascular type, often don't make it far beyond 40. Readers were incensed by this lack of understanding and distinction.]
So, for your reading pleasure, we have re-posted the readers' comment below. Please feel free to post something equally scathing to the article comments section right here. Unfortunately, it may require Facebook to post.