Guest Speaking - Growing up & Living with a degenerative disability
In November 2018 I was guest speaker at the SHADA (Sexual Health And Disability Alliance) conference. Here is a 'slightly less personalised' version of my speech. Intro My name is Emma, I am 38 and live with a disability called Friedreich’s Ataxia. The science bit - Friedreich’s ataxia is a recessive disorder characterised by the progressive degeneration of the spino-cerebellar system due to genetic abnormality. Presents in a similar way to muscular dystrophy, MS and motor neurone disease. Here are a few important facts: I was diagnosed at age 7 FA does not affect the mental functioning of the brain – meaning as my physical body degenerates my mental capacity does not. As you can see , I am a wheelchair user. I can no longer transfer myself so I use hoists. I have carers on a daily basis. I have very little in the way of coordination and physical strength. I deal with other issues that come along with my FA, such as insulin controlle...