One in Thousands: - my life as a rarity - Paperback

by Dorrit Barrett (Author)

Ehlers-Danlos Syndrome is probably the most overlooked physical handicap in the world. A genetic hiccup changes your body completely, and as you look "normal", nobody understands why you can't BE normal. Not even your doctor, who may have forgotten all she ever heard about the rare syndrome. The author has fought for a "normal" life for 77 years. It didn't become normal, but both interesting and meaningful in spite of her invisible enemies: Her own shame of not being like everybody else, and an environment - including the medical world - that was convinced her problems "were all in her head". Her kind of EDS, the classic, only appears in 1 in 20.000 people. Some believe as few as 1 in 40.000. Other variations - there are 13 in all - are far more common. You may have heard of people who suffer from one of them. You may even know one.