TM Society sponsored an AFM Parents Day which was organised by Birkdale Paediatric and Adult Neurological Rehabilitation Clinic in West London www.neuro-physio.co.uk and Kerry Wilkinson, AFM parent from Gloucester. The Parents Day was oversubscribed with 24 attending, including visitors from Netherlands and Spain.
Dr Ben Greenberg from Dallas USA was the principal speaker. Dr Greenberg was in the UK at the invitation of the British Association of Paediatric Neurologists, to speak on AFM at their annual meeting in Belfast. For anyone who wants to understand Acute Flaccid Myelitis which affects infants and young children, started in the USA in 2014 and is rapidly spreading to Europe, Dr Greenberg’s presentation is an excellent summary of AFM and is recommended for all.
Dr Greenberg was followed by Dr Julia Stowe from Public Health England (UK government equivalent of CDC in USA). She described the work PHE has done, setting up a working group on AFM and trying to improve diagnosis and reporting of new cases in England and Wales. There are now over 50 confirmed AFM cases. Dr Ming Lim from Evelina Childrens Hospital in London then spoke as a clinical neurologist. Dr Lim stressed that while the flaccid paralysis from AFM was generally long-lasting, there is also longer potential for recovery compared to other conditions like TM and ADEM.
Mr Tom Quick, a neurosurgeon from the Royal National Orthopedic Hospital in Stanmore, spoke on the application of established nerve transplant surgery techniques for AFM. He mentioned that sensory nerves were almost 100% normal in cases of AFM (in limited experience), so surgery could be limited to efferent nerve pathways. He also spoke of the need to develop AFM-specific outcome measures for nerve transplant surgery.
Another neurosurgeon Ms Lisa Atkins from John Radcliffe Hospital in Oxford, then spoke about her collaboration with the National Spinal Injury Centre at Stoke Mandeville and US neurosurgeon Mitch Seruya from Los Angeles, to adapt nerve transplant surgery for AFM. Ms Atkins has now performed 3 AFM surgeries in 2019, which are currently being evaluated at NSIC for outcomes.
Mrs Farshideh Bondarenko, founder and principal of the Birkdale Clinic, then spoke of the particular rehabilitation challenges posed by AFM and various techniques Birkdale Clinic have been applying.
The TMS made videos of the five presentations and these are now available in the SRNA website Resources library.