My father died from bowel cancer in his late 50s. I survived breast cancer in my late 40s and of course this means I’m a reasonable candidate sooner or later for possible bowel cancer to give me a run for my money. As such I had to have a colonoscopy every year to ensure I kept this bogie man away. Read the rest of this entry »

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 »

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 »

Recent studies in reputable medical journals have linked Autism to seemingly farfetched things like being born to mothers with pre eclampsia, being born prematurely, being born to older fathers, being born to smokers, being born by cesarean, being circumcised under the age of 5. Read the rest of this entry »

I was wheat/rye free in 1990, then returned to wheat on and off until 2001, then was dx’d as gluten intolerant Read the rest of this entry »

This month’s artwork is titled ‘Starman’. Read the rest of this entry »

I was diagnosed with Mixed (mostly central) apnea in March 2012. I had complained about waking and finding I was not breathing in 2009. I explained that I wasn’t gasping for air (as happens in Obstructive Apnea), had merely woken to find I was laying there like a dead person, not breathing (usual in Central Apnea), commonly with my hands and feet numb or tingling (usual in sensory neuropathy). But because I was thin, young and didn’t snore, it was presumed I couldn’t have (obstructive) ‘apnea’ so therefore couldn’t have apnea at all. Read the rest of this entry »

The definition of a degenerative disorder is when there is an active process contributing to measurable decline in functioning, be that of the spine, of the brain, of the myelin that protects the nerves. Ehlers Danlos Syndrome is not an autoimmune disorder (though one could certainly have both). In this sense though autonomic neuropathy, in fact polyneuropathy, may occur in both MS and EDS, in EDS there is no autoimmune disorder at work attacking the myelin, even though there may be degeneration of the connective tissue that protects the myelin which in turn protects the nerves. Expose the myelin through the degeneration of the connective tissue that protects it and you leave the myelin vulnerable to whatever damaging processes the body has to offer. Read the rest of this entry »

Connective tissue in the brain is essential to learning and how we store information. What then of those with connective tissue disorders such as Ehlers-Danlos Syndrome? Whilst EDS is presently thought to effect 1 in 5000 people in the general population (though other rarer forms like EDSIV 1 in 20,000) would we be more likely then to find EDS related connective tissue disorders in those with learning and developmental disabilities? Read the rest of this entry »