PhD student who would like to bring the latest in Tourette research to you. Come with me on my journey! #Tourette #Autistic #HealthyMultiplicity

Joined July 2021
In 2024, collaborators, including Herts Lecturers, came together to create "Everyday Tics", showing the complex expressions of tics as experienced in a day. 💚 Watch the trailer below created by Herts Lecturer Samantha Jury. 🔗Full film: youtu.be/inSUgtXca1Y @tourettesaction
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Tourette Researcher retweeted
🎬 What does a typical day look + sound like for an adult living with Tourette’s? The short film Everyday Tics brings lived experience to screen – complex, honest, real. By @uniofherts lecturer Samantha Jury 🎞️ 🔗 buff.ly/h9OTChp
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Last study of the PhD is now live! Please support. Unlike previous this has global reach, so please share as widely as possible! Thanks so much in advance to everyone who participates! tiny.cc/PhonicTicSurvey - Now with Alt text
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Last study of the PhD is now live! Please support. Unlike previous this has global reach, so please share as widely as possible! Thanks so much in advance to everyone who participates! tiny.cc/PhonicTicSurvey
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Tourette Researcher retweeted
Can anyone help a #TICS question from one of our members? ‘My daughter has started to have tics where she jolts her neck. She’s had a lot of pain lately in her upper cervical spine and neck. I wondered if somehow the Hypermobility she has (hEDS) is making the tics cause too much movement and contributing to the pain’?
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Really amazed and excited how my PhD journey is going. I never thought it would have impact both in the sciences and the arts. A pre-submission soon! Can't wait for the full event in March! uharts.co.uk/whats-on/2025/m…
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Tourette Researcher retweeted
How is FND taught and represented in neurology across Europe? Our new paper – led by the brilliant @TerezaSerranova in Prague “FND in Europe: regional differences in education and health policy”. Open access: onlinelibrary.wiley.com/doi/… a brief thread.... 1/🧵
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Happy to report I am doing a presentation on #TouretteSyndrome in Adulthood in person for @TICYorkshire in August! Really looking forward to seeing familiar faces and connecting with new people. To those going, see you there! #tics #adulthood
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Looking forwards to delivering a keynote lecture on current trends in #TouretteSyndrome research for @TICYorkshire this coming month! Why not tag along? There are some incredible speakers and I’m feeling very honoured to be included in the lineup! #tics #TS #Neurodiversity
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I'm looking to get in touch with as many people as possible who are Tourettic (/have #TouretteSyndrome) and also #research #Tourette Syndrome. Whether you're based in academia or not, early career or professor... I'd love to look into creating a network! #AcademicTwitter
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Tourette Researcher retweeted
Really important perspectives. From the paper, "We propose to apply the term "catatonia" as a descriptive element...rather than as a diagnostic [phenotype]." Agreed, #catatonia lacks phenotypic specificity (doi.org/10.1016/S2215-0366(1…) It does, though, get us in the ball park! ⚾️
Can you name all the overlap features between catatonia and neurological or neuropsychiatric diseases? What really is catatonia? The term “catatonia” was introduced by German psychiatrist Karl Kahlbaum in 1874. @AbhiLenka11 and @FixelInstitute medical student Vishal Perara as well as Aspen faculty @AlbertoEspay have a great new gaps and controversies piece. Born from conversations about catatonia during @movedisorder Aspen course. Key Points: - Historically catatonia was a term tied to schizophrenia. - There are a diverse range of phenotypes and has been observed in various medical and neuropsychiatric conditions. - There are both hypokinetic and hyperkinetic phenomenologies. - The current versions of the International Classification of Diseases (ICD-11) and the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) require clinicians to identify any three signs of 15 (ICD-11) or 12 (DSM-5) for the diagnosis of catatonia. My view: Clinicians should keep in mind that catalepsy and waxy flexibility are the only motor features w/ high specificity for the diagnosis of catatonia. There is a lack of a clear definition, and many inconsistencies in the description of various catatonic signs. Our discussions at the Aspen course on catatonia have been rich and have triggered a really interesting dialogue and paper. Could there one day be a bi-axial classification framework similar to that used for dystonia and tremor to encourage the evaluation of underlying etiologies and to guide therapeutic decisions and to improve the outcomes? movementdisorders.onlinelibr… #catatonia #parkinson #fixelinstitute
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Tourette Researcher retweeted
It is time to reappraise the primary diagnostic criteria for tic disorders? Yes. Times change and a nice construct is proposed by Marianna Sarchioto, Davide Martino and colleagues in a great viewpoint in @MDJ_Journal. Key Points; -The categorization of “primary persistent tic disorder” into different diagnoses or clinical entities is not supported by evidence and has been challenged by the recently increased experience of functional tic disorders.” - Keeping the ‘separation among Tourette syndrome, persistent motor tic disorder, and persistent phonic/vocal tic disorder perpetuates and stigmatizing a divide between TS and non-TS tic disorders that is neither clinically nor neurobiologically justified.’ - The authors propose that the ‘community of clinicians, scientists, and persons with lived experience should join forces to ‘reappraise existing diagnostic criteria and establish a single diagnostic entity identified as primary persistent tic disorder. (or other conceptually similar terminology).’ - ‘The key proposed changes are summarized in tye below table.’ - ‘Whether a neutral term will one day be preferred to the use of the TS eponym will require discussion and buy in from multiple stakeholders.’ My view: Sometimes we must let go of the things we hold fast to; however if we go down this path, the dialogue should be approached slowly, so all stakeholders can ‘have the chance to get on the bus and suggest changes to the route.’ doi.org/10.1002/mds.29868 #tourette @ESSTS_Tourette @TouretteAssn
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Tourette Researcher retweeted
NICE have amended the scope for the guidance on tic disorders to include adults. buff.ly/4aaCpny This means that they’re looking to appoint an adult who has direct lived experience of tics or #Tourette Syndrome. Deadline is midnight on 29 May 2024 buff.ly/3UGPLmF
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Tourette Researcher retweeted
Can you identify 'cerebellar scanning speech?' Here is a nice case example in Wilson's disease and even if you do not speak his native language, by listening carefully to the pattern of speech, it may help you pick up what folks mean when they say 'scanning speech.' Definition on National Library of Medicine: 'An abnormal pattern of speech in which the words are as if measured or scanned; there is a pause after every syllable, and the syllables themselves are pronounced slowly. ncbi.nlm.nih.gov/medgen/1161… Nice example of a case: youtube.com/watch?v=wfEGdr_W… #cerebellum #Wilsonsdisease #speech
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