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At the age of 14, I was diagnosed with Friedreich’s Ataxia. My parents were growing increasingly concerned about the curvature of my spine, and the main reason for their call was to seek a medical answer for it. It was a frightening picture for my family, because I had in fact, been developing severe scoliosis. This physical attribute of Friedreich’s Ataxia was the tipping point which led to my diagnosis. At 25 I was given more devastating news. At this time, when I sought medical checkups for Scoliosis, I was told that if my spine continues to bend, it would also severely damage my heart even more. Today, I am in a position to understand my disability through a pragmatic perspective. I am confident in what I know, and how to manage my disability to achieve the best outcomes for me. In my recent blog post, I discuss the relationship between Scoliosis, Cardiomyopathy and my individualistic style of Friedreich’s Ataxia. Read it here: https://petergibilisco.wordpress.com/2019/06/22/the-independence-of-friedrei chs-ataxia-and-its-relationship-to-scoliosis-and-cardiomyopathy/ Yours Sincerely, Peter Gibilisco, B Bus (Acc) Ph.D. (Melb). Honorary Fellow University of Melbourne. New Book: 6 & 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation. See my web-site http://petergibilisco.com.au/ ________________End of message________________ This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies). Enquiries about list administration should be sent to [log in to unmask] Archives and tools are located at: www.jiscmail.ac.uk/lists/disability-research.html You can VIEW, POST, JOIN and LEAVE the list by logging in to this web page.