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.