{"type":"rich","version":"1.0","provider_name":"Transistor","provider_url":"https://transistor.fm","author_name":"Rad Chat","title":"E202: Sarah Phillips - Living With an Incurable Disability","html":"","width":"100%","height":180,"duration":2694,"description":"Trigger Warning: this episode discusses disabilities and life limiting conditions.\n\nEpisode 202: Part of the Equity, Diversity and Inclusion Series (Part 20)\n\nDescription: In this powerful episode, Naman Julka-Anderson and Jo McNamara sit down with Sarah Phillips. Sarah lives with two incurable conditions that shape her daily life. The first is a rare genetic neuromuscular disease caused by the absence of a gene needed to produce the myelin sheath, leaving her with an exceptionally unusual presentation even within a rare disorder. She also has a metabolic condition that causes her body to burn calories at an extreme rate, making it impossible to maintain weight without enteral nutrition and placing her at high risk of refeeding syndrome and related complications. Despite these challenges, she's committed to transforming her experiences into meaningful projects and businesses that support others living with chronic illness and disability.\n\nCPD Reflection Points:\nReflect and consider how your assumptions about “ability,” productivity, or independence shape the way you interact with people living with disabilities or incurable conditions.\nRead this article and consider the impact of not being provided reasonable adjustments.\nLook up the George ASDA adult adaptive clothing range and consider how you can share this. \nComplete this form for your accredited digital badge: Digital Badge Form.\n\nLinks from the Episode:\nHereditary neuropathy with liability to pressure palsies(HNPP)\nThe British Association for Parenteral and Enteral Nutrition(BAPEN)\nDemyelinating disease: What can you do about it?\nIntermittent Self Catheterisation - Bowel and Bladder Community\nFoot drop\nMencap\nMoney Saving Expert: Critical Illness Cover\nPersonal Independence Payment(PIP)\nTransfer of Undertakings(Protection of Employment)(TUPE)\nNatalie Woodward\nResearch links from the Episode:\nDisabled people’s employment in the UK: A thematic review of the literature\nThe role of workplace accommodations in...","thumbnail_url":"https://img.transistorcdn.com/0wFiffqRab_C_nPB5bCBJUg_mULsM2eF_DxRLoq0kVA/rs:fill:0:0:1/w:400/h:400/q:60/mb:500000/aHR0cHM6Ly9pbWct/dXBsb2FkLXByb2R1/Y3Rpb24udHJhbnNp/c3Rvci5mbS8xZDE3/OGQ3YjY4OTE4Yjkz/ZmQzNTJhNDlkYmQz/OTY3ZC5KUEc.webp","thumbnail_width":300,"thumbnail_height":300}