Philippa Lee
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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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10 Min Read Exciting new review of the importance of the use of neuroimaging in Hereditary Spastic Paraplegia by the following institutions: Department of Neurology and Neuroimaging Laboratory, University of Campinas (UNICAMP), Campinas, Brazil Institute of Neurology, Federal University of Rio de Janeiro (UFRJ), Rio de Janeiro, Brazil Department of Neurology, Federal University of São
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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
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Thanks for joining me! I’m an author (I write books as Philippa Faulks), editor, researcher, and advocate for rare diseases, of which I have two. I’ll be adding new posts regularly in all categories and I hope I can be a useful guide on your journey. Good company in a journey makes the way seem
Philippa Lee 