I have been asked to take part in the Rebellious Sounds Archive of Women’s Activism, where I will document my story to be part of the first community archive collection of oral histories about the activism of women in the South West. I am going to be recorded in a couple of weeks time and I would love to know about other peoples experience of diagnosis of Tourette Syndrome within adulthood. My focus for my story is going to be around the confusion of the condition and how often adults with TS are misdiagnosed because of G.Ps lack of experience and knowledge of the condition. I feel that one of the most common misconceptions is that TS is only seen in childhood, and that it disappears in adulthood. This can lead to many adults finding diagnosis a lot later on in life, and a real lack of support that comes with it.
If you have TS and were diagnosed as an adult I would love to hear from you. I have 6 key questions that I would like to ask you:
- Your age when diagnosed?
- How long it took to be diagnosed?
- What kind of support you had?
- What treatment you were prescribed?
- Did you feel like your G.P had a good understanding of TS?
- Did you get your diagnosis on the NHS or privately?
Thank you for your time!
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