One in Thousands: - my life as a rarity

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.

• | Author: Dorrit Barrett
• | Publisher: Books On Demand
• | Publication Date: Apr 26, 2023
• | Number of Pages: 206 pages
• | Language: English
• | Binding: Paperback
• | ISBN-10: 8743030769
• | ISBN-13: 9788743030768