One in Thousands
- my life as a rarity
5.0
( 1 )
Engelsk
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 nor...
Forlagsbeskrivelse af One in Thousands af Dorrit Barrett
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.
Detaljer
Forlag
Books on Demand
ISBN
9788743021667
Sprog
Engelsk
Originalsprog
eng
Originaltitel
One in Thousands
Udgivelsesdato
25-04-2023
Format
E-bog
E-bog format
REFLOWABLE
Filtype
Epub
DRM beskyttelse
DigitalVandmaerkning
Datamængde
1474 KB
Varenr.
3108690
EAN nr.
9788743021667
Varegruppe
Lydbøger
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Jeg har læst “One in Thousands - my Life as a rarity” og blev meget berørt af den. Det kræver sin mand/kvinde at leve med bindevævssygdommen Ehlers-Danlos Syndrom, EDS. En sygdom omgivelserne ikke umiddelbart kan se, men som genererer så megen lidelse, med en silkepapirtynd hud, der let brister og har svært ved at hele. At forfatteren er en stærk kvinde med karakterstyrke, stamina og humor skinner tydeligt igennem - og hendes utroligt interessante liv skyldes en stædighed og kamp ud over det sædvanlige. Trods navnet er Dorrit Barret født og opvokset i Danmark, og hun tegner et sjovt, varmt og genkendeligt billede af forstadslivet i 1950’erne og 60’erne.