[45] All these research projects are driven and largely funded by AHC patient associations with hope for an improved future for those living with this cruel disease. Thanks to Bridget at AHC Spain for creating these fabulous collages. Parents usually take advantage of this short time of relief after a long-lasting attack, to feed and hydrate their children. [19, 20, 21, 22], Several large-scale genotype-phenotype studies have been carried out showing that some ATP1A3 mutations are associated with more severe phenotypes (E815K, pGlu815Lys), some intermediate phenotypes (D801N, pAsp801Asn), and some milder phenotypes (G947R, pGly947Arg). For about 70-80% of cases, the clinical diagnosis is confirmed by the presence of a mutation in the ATP1A3 gene. Adult patients and their families need to be supported in the transition from pediatric neurology to neurology for adults. [4, 5]  These neurological symptoms will vary and fluctuate during an individual’s life.Some symptoms are episodic (also called paroxysmal, i.e having a sudden onset, a duration, and a conclusion, either spontaneous or induced by drugs) and some others are permanent manifestations, even if fluctuating in severity and intensity, and comorbidities. This genetic mutation is now included in rare epilepsy genetic panels, no doubt leading to more individuals being correctly diagnosed.Currently around one hundred different ATP1A3 mutations are reported to cause AHC: some of them are more frequent (D801N and E815K), some others are single-case mutations. Additionally, for a minority, the mutation is within the ATP1A2 gene. [6]  Moreover, about 20% of AHC patients do not have a mutation in the ATP1A3 gene, leading many experts to believe there are more genes yet to be discovered to explain this condition. [11]  Gastrointestinal disorders[12], breathing complications, and sleep apnoea have also been shown in AHC. For acute treatment, the most effective reported drugs are benzodiazepines and chloral hydrate. Alternating hemiplegia of Childhood is a condition that causes transient weakness of either, or both, sides of the body. Alternating Hemiplegia of Childhood (AHC) is a complex neurodevelopmental disorder. AHC is a neglected disease, still unknown and ignored by most public health, scientific, and education institutions, pharma companies, and the public in general.AHC family associations are struggling all over the world in a joint effort to raise awareness about the disease, to advocate for more accurate and appropriate health and social services, to collect funds for research. However, it is recognised that on waking the attacks can re-occur within the first hour. In Europe, most of these centres are now members of EpiCARE-ERN, the European Reference Network for Rare and Complex Epilepsies www.epi-care.eu. A multispecialty reference center with the availability of various specialists with considerable experience in AHC should take charge of patients, directly or through a local centre. There is no regulatory approved treatment for AHC. Share on Twitter It typically presents before the age of 18 months. Ultra-Rare Neuro Condition [35, 36, 37, 38, 39]. When she was just 10 weeks old, she had her first experience of Alternating Hemiplegia of Childhood (AHC). Join the Alternating Hemiplegia Of Childhood community. Alternating hemiplegia of childhood (AHC) is a rare neurological disorder which usually presents before 18 months of age and is characterised by recurrent alternating episodes of hemiparesis. AHC is a ‘One in a Million’ Rare Medical Condition, Up to 100 UK children a week hospitalised with rare post-Covid disease, Share on Facebook For prophylaxis, Flunarizine is the only drug effective for most patients, albeit in open-label experience. Alternating Hemiplegia of Childhood (AHC) is a rare neurological condition causing weakness in one or both sides of the body. Since then, research studies into AHC genotype-phenotype correlations, cardiac disturbances, secondary genes for AHC, and testing candidate compounds for AHC treatment (using in-vitro and in-vivo models) have been initiated. 7 talking about this. Sleep plays a peculiar and critical role in AHC. As well as continuous follow-up treatment and family Support the neurological system occur can vary dramatically from individual... Suggesting a childhood disease to neurology for adults reported drugs are benzodiazepines and chloral hydrate # OneinaMillion campaign engaged people! 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