Living with a progressive illness

  • UK Disability History Month

    Did you blink and miss it? Phew, that’s UK Disability History Month over for another year and I’ll bet you are all thinking how relieved you are that you aren’t still being constantly bombarded with big brand companies changing their profile pictures, flying the disability flag, selling special sandwiches in our honour, or flooding social

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  • Is anaesthesia a problem for someone with HSP [hereditary Spastic Paraplegia]? This was a question I needed an answer to when I was told that I may need surgery for the spinal cyst I have. Blank looks, eye-rolls or shrugs were about the sum of it. So, I turned to Dr Google and found a

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  • An ill-fitting box ‘…I put the word “diagnosis” in quotes because I have not yet seen that case in which a “diagnosis” led to a “cure”, or in fact to any outcome other than a confirmed, and therefore an enforced, debility.’ – Joan Didion, Blue Nights. I spent decades wanting a diagnosis, a meaning, a

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  • On Rare Disease Day – when you hear hoofbeats, it’s definitely zebras!

    That sounds bizarre, so let me explain. In the medical world a ‘zebra’ is medical slang for a ‘rare, unusual, or surprising disease or condition’. The usual quotation, frequently used in medical school, is ‘When you hear hoofbeats, think of horses, not zebras’ – which is encouraging the student doctor not to confuse common ailments

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