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Episode 27: Dr. Anica Zeyen’s Charles Bonnet Syndrome and Research
Manage episode 429828258 series 3528525
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In this episode, Shaimond welcomes Dr. Anica Zeyen, a UK-based researcher who has CBS and cone-rod dystrophy. Dr. Zeyen shares her experiences with vision loss and the onset and development of her CBS symptoms. She offers insights into coping mechanisms and discusses how trust, relationships, and communication play a crucial role in managing the condition. The conversation also delves into Dr. Zeyen's extensive research on disability inclusion, her work in making public spaces more accessible, and her advocacy for disability rights across various countries. Despite dealing with nearly continuous hallucinations, Dr. Zeyen has made significant strides in academia and activism. She also discusses the challenges and benefits of using a white cane and a guide dog, her personal experiences living with a disability in different countries, and the importance of understanding individual needs in creating a more inclusive world. The episode wraps up with details about her blog, Disability Research Diary, where she shares her research and personal experiences.
Read Dr Zeyen’s Blog https://drdiary.blog/
Contact Dr. Zeyen Anica.Zeyen@rhul.ac.uk
For help with CBS call 704-389-0160
Contact me at cbsyndromepodcast@gmail.com
For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com
For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk
To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.
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