New Year Wishes
Attaching New Year wishes sent out via our AHC Newsletter on the 5th of January 2021.
Alternating Hemiplegia of Childhood - UK
Registered UK Charity No: 1192701
Attaching New Year wishes sent out via our AHC Newsletter on the 5th of January 2021.
AHC UK Research Newsletter 18th January 2021
We would love to hear from you! The AHC and ATP1A3 Natural History Study Alternating Hemiplegia of Childhood (AHC) is an ultra-rare disease with an estimated one in a million occurrence. Patients suffer from a combination of disabling paroxysmal events (hemiplegic or dystonic attacks and, in some cases, epileptic seizures) and varying degrees of permanent neurologic features (ataxia, dystonia, neurocognitive delay, mental health problems). It is a disabling condition that impacts severely the quality of life of the affected individual and their families. About 75% of the patients have a mutation in the gene ATP1A3, in the others the cause of AHC is mostly unknown. Curative therapies are not as yet available and the medications used to alleviate symptoms like hemiplegia, dystonia, and seizures are helpful for some, but not all patients. As long-term follow-up studies are lacking, clinicians cannot provide families with an accurate prognosis. Driven by our inability to substantially help our growing cohort of afflicted patients, and with the support of AHCUK, the UK support group, we have set up the AHC and ATP1A3 natural history study led by Professor Helen Cross and Dr Katerina Vezyroglou at Great Ormond Street Hospital in London. The study aims to answer some of the unanswered questions about AHC, such as Why are different patients affected differently? Can MRI and EEG help us predict the severity of the disease? What causes AHC in patients without a ATP1A3 mutation? All patients (children and adults) with AHC or/and with a mutation in ATP1A3 are welcome to participate. If you have questions or are interested to find out more, please get in touch at k.vezyroglou@ucl.ac.uk While viewing the pdf attached…
The Autumn 2020 edition of the Rare Revolution Magazine was entirely dedicated to rare and complex epilepsies of which Alternating Hemiplegia of Childhood was highlighted. The article was written by…
A REFERENCE GUIDE FOR MEDICAL PROFESSIONALS We would like to thank our sister AHC Charity organisation (AHCF) in the United States for this attached document for parents and medical professionals.…
Hello Friends Attaching our November 2020 Research Newsletter – Our AHC researchers continue to work across the world to try and make progress in understanding this complex condition. There are…
Anaesthesia recommendations for Alternating Hemiplegia of Childhood syndrome by Maria A. Rodriguez-Navarro, JM Morales Meseguer Hospital, Murcia, Spain and Mohamad A Mikati, Paediatric Neurologist, Duke University Medical Centre, Durham, NC,…
Data collection for the OBSERV-AHC Study (a Study of the IAHCRC Consortium) has just started in Spain, France, UK, and the USA, supported by their national patient associations. In Italy,…
Shouichirou Kusunoki Jun Kido Ken Momosaki Takaaki SawadaTomoko Kashiki Shirou Matsumoto Kimitoshi NakamuraDepartment of Pediatrics, Graduate School of Medical Sciences, Kumamoto University, Kumamoto, Japan AbstractAlternating hemiplegia of childhood (AHC) (MIM…
View ORCID Profile Simona Balestrini, Mohamad A Mikati, Reyes Alvarez Garcia-Roves, View ORCID Profile Michael Carboni, Arsen S Hunanyan, Bassil Kherallah, Melissa McLean, Lyndsey Prange, Elisa De Grandis, Alessandra Gagliardi, View ORCID Profile Livia Pisciotta, Michela Stagnaro, Edvige Veneselli, Jaume Campistol, Carmen Fons, Leticia Pias-Peleteiro, View…
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