Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Autism, Ehlers Danlos, Dysautonomia and Respiratory Failure – what do we know?

September21

IMG_20140913_220056 I was diagnosed with Autism in 1965 (aged 2). I grew up with autonomic issues, none of them formally diagnosed until they were pushed over the line following two general anaesthetics and chemo in 2011-2012. Read the rest of this entry »

Life with a Central Hypoventilation Syndrome

March7

Donna Williams central apnea

WHAT DOES IT MEAN?
Central hypoventilation means your brain keeps forgetting to keep you breathing. See, we have this thing called a ‘respiratory drive’ and this makes us keep breathing. This is why we don’t easily ‘just die’, because there are two things keep us alive; a beating heart and a respiratory drive. If either of those fail partially then we will have problems. Read the rest of this entry »

Falling Asleep In the Bath – with Ondine’s Curse

February10

Donna Williams Relaxing Bath with Ondine's Curse Most people love a big relaxing candlelit bath. Put your head back under the water and give your ears a good soak. Maybe even have a snooze. Well, its not so straightforward with the hypoventilation disorder of Ondine’s Curse. Read the rest of this entry »

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ONDINE’S CURSE – a children’s social story about Central Hypoventilation/CCHS

February1

Sleeping by Donna Williams
ONDINE’S CURSE by Donna Williams Read the rest of this entry »

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Autism and Hypoventilation

June19

donna williams aged 0.4 months old I was born in 1963 to an alcoholic mother who became sectioned under the mental health act when I was 3. I was born with Ehlers Danlos Syndrome (EDS) which is a collagen disorder thought associated with high functioning autism. Collagen plays a part in immune regulation and brain connectivity. I was immune deficient since 6 months old and had IgE allergies to wheat and legumes which would have been present since infancy. Then a lot happened when I was two and a half. Read the rest of this entry »

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