En savoir plus
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.
A propos de l'auteur
Dorrit Barrett was born i Denmark in 1945. She was the eldest of 4 children and spent much of her childhood looking after younger brothers. She was a frequent flyer in the emergency rooms, as her skin split for next to nothing. Nobody in the family had similar problems, and no special care was taken.
After high school she got a MA in English and Spanish literature. She had a multitude of jobs from an early age - from gas station attendant to university teacher, translator, journalist, and writer.
Now lives in Spain with her third husband. Has one adopted child and a large number of "bonus children" from her husband's first marriage. A large family where nobody else has EDS.
She still writes - mainly for magazines. And she still occasionally spends hours in the emergency room.
