• NMOSD Your Way - Becoming an Advocate

  • Apr 8 2022
  • Length: 27 mins
  • Podcast

NMOSD Your Way - Becoming an Advocate

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  • Summary

  • In this episode, we interview patient ambassador and host of the “NMOSD Your Way” podcast series, LelainiaLloyd. We get to know more about our host and her advocacy work in NMO. We discuss how Lelainia became involved in advocacy, the opportunities and challenges she has faced, and resources and tips for others thinking of becoming an advocate in the area of rare diseases. Lelainia explains what drives her decision in what advocacy projects she takes on and maintains a balance and ensures self-care. She describes when along this journey of becoming an advocate she actually realized that's what she is, an advocate. And what she finds the most fulfilling about advocacy. Lelainia spells out what she would have liked to have known at the beginning of her advocacy work and what is the one thing she looks forward to accomplishing still. Our Guest: Lelainia Lloyd have been living with Neuromyelitis Optica (NMO) since she was 12 years old. With an epic 30-year journey with this disease, from misdiagnosis to diagnosis to continuing to navigate a course through the obstacles of ignorance, ableism and a medical culture that sometimes misses the mark for patient-centred care. She believes knowledge is power and she is passionate about health literacy and knowledge translation. The purpose of this podcast is to make information accessible to NMO patients so that we are better equipped to make informed choices about our health. Each episode has been inspired by questions fellow patients have asked. Our community deserves answers and she is here to help us get them. Lelainia feeds her spirit by making art, writing, travelling, wheelchair curling, volunteering and spending time with her three grandsons who are the lights of her life. Lelainia was selected as a Rick Hansen Difference Maker in 2011, was awarded the Queen Elizabeth II Diamond Jubilee Medal for her lifetime of service to Canada in 2014 and was recently awarded the R. Paul KerstonCommunity Educator Award from the University of British Columbia. To learn more about NMOSD, visit: The Sumaira Foundation: https://www.sumairafoundation.org/tsf-canada-welcome-jennifer/ The Multiple Sclerosis Society of Canada at: https://www.mssociety.ca/ Please visit https://www.NMOSD.ca/ for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor. The podcast is intended exclusively for the residents of Canada and is subject to all applicable laws and regulations therein. The podcast is intended for informational, personal and non-commercial purposes only. Persons having any specific questions, regarding diagnosis or treatment, are advised to contact their healthcare provider. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. For further information about your medical condition, please talk to your healthcare professional. All rights reserved. Alexion Pharma Canada Corp. For more NMOSD information and resources, please visit https://nmosd.ca/
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