Rare disease
Research, advice, tips and resources for living with a rare disease or chronic condition.
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Three not-so-little words Following on from ‘Drowning in my Diagnoses…part one’. 2016: Having spent several months in Egypt, I am now concerned that whatever a Tarlov Cyst is, it is causing more problems than I first thought. Whilst hiking in Egypt, I had been experiencing more back pain and had started to trip over with
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10 minute read June 21 marks the day to raise awareness of Motor Neuron Disease (MND). There are several rare diseases classified as Motor Neuron Diseases – Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) both share clinical similarities with the most recognised form of MND – Amyotrophic Lateral Sclerosis (ALS, a.k.a Lou Gehrig’s
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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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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
Philippa Lee 