Communauté l’Hémiplégie Alternante

Voici une sélection d'information en provenance des malades & des professionnels de santé pour mieux comprendre l’Hémiplégie Alternante

Ressource l’Hémiplégie Alternante

Questions fréquemment posées pour l’Hémiplégie Alternante

Voici quelques question et réponses qui pourraient vous intéresser:

Please email [email protected] if you have a question that you would like added to this section.

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What are the long term effects of AHC?

At this time, AHC would still be considered a “new” disorder due to its relatively recent diagnosis. There is no proof that the disease is fatal or shortens life expectancy is any way, but sufficie...

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Will a child “grow out of” AHC?

Although the name AHC contains “of childhood” in it, there is no evidence to suggest that a child will be cured simply as they age. Many children exhibit a greater degree of ability to handle the a...

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What causes a hemiplegic episode?

The causes of hemiplegic attacks differ among children. High stress activities have been know to cause attacks as well as the presence of a cold or upper respiratory problems. Children are affected...

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What other symptoms are associated with AHC?

Children with AHC have exhibited a wide range of symptoms in addition to AHC. These include tonic attacks (lack of muscle tone), dystonic posturing (stiffening of extremities), nystagmus and other ...

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What is Alternating Hemiplegia of Childhood (AHC)?

AHC is a rare neurological disorder in which repeated, transient attacks of hemiplegia occur, affecting one side of the body or the other, or both sides of the body. The hemiplegia (paralysis of a ...

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Groupes de Patients l’Hémiplégie Alternante

Voici les associations de patients qui ont une expérience et une expertise dans les maladies l’Hémiplégie Alternante. Ils sont partenaires dans la creation de ce site. Vous pouvez les contacter pour plus d'information à propos de leur champ d'action.

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  • AHC Assoc. Iceland

    The AHC association of Iceland is a non-profit organization offering support for affected patients and their families.

    Contacter AHC Assoc. Iceland
  • A.I.S.EA

    A.I.S.EA Onlus raggruppa le famiglie italiane con figli colpiti da Emiplegia Alternante e amici desiderosi di contribuire alla lotta contro questa malattia. The official website, www.aisea.org The blog, http://blog.aisea.org The FB page http://www.facebook.com/aiseaonlus Email [email protected] Contatti: Rosaria Vavassori, Presidente c/o A.I.S.EA Onlus Via Sernovella, 37 - 23878 Verderio Superiore (LC) Tel. e Fax (39) 039.9518046 Email [email protected]

    Contacter A.I.S.EA
  • AESHA

    La Asociación Española del Síndrome de la Hemiplejia Alternante (AESHA) es una asociación sin ánimo de lucro que opera en el territorio español, formada por distintas familias con hijos afectos por la enfermedad con el objetivo común de mejorar el conocimiento de la misma, mediante la colaboración con otras asociaciones internacionales, apoyando la investigación, favoreciendo el intercambio de las experiencias vividas entre sus miembros y asesorando en materia de aspectos sociales, educación y soporte a familiares.

    Contacter AESHA
  • AHC Foundation

    Mission Statement: Our mission is to find the cause(s) of AHC, develop effective treatments and ultimately find a cure, while providing support to the families and children with AHC by funding research to accomplish these goals. Secondarily, we strive to promote proper diagnosis, educate health care professionals, the public and related organizations, encourage the worldwide exchange of information and advance the development of an international database of all AHC patients.

    Contacter AHC Foundation

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Documents l’Hémiplégie Alternante

Ressources, documents et informations détaillées sur l’Hémiplégie Alternante. Dans cette section, vous pouvez télécharger des brochures, demander des documents imprimés ou trouver des liens utiles.

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Articles l’Hémiplégie Alternante

Articles les plus récents :

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Study on Quality of Life of People with AHC (2011 - 2012)

The authors of the study are: Philip Franchini and Rosaria Vavassori of AISEA; Dr. Elisa de Grandis and Professor Hedwig Veneselli of the Gaslini Institute of Genoa, and Dr. Melanie Giannotta Osped...

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Orphanet: Alternating hemiplegia of childhood (June 2009)

Alternating hemiplegia of childhood (AHC) is a rare neurodevelopmental disorder characterized by recurrent episodes of hemiplegia and paroxysmal disturbances associated with persistent developmenta...

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Evènements l’Hémiplégie Alternante

Événements les plus récents :

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  • Septembre 2011

  • September is AHC Walk Month - AHC Foundation

    From 1 to 30 septembre 2011

    The 2nd Annual North Carolina Walk will be held on Saturday, September 10th! The 6th Annual Chicago Walk will be held on Sunday, September 18th! First Annual AHC walks will also be held in (dates TBA): * Sacramento, CA * East Lansing, MI * Neola, IA * Kansas City, MO * Cortland, NY

    Plus d'informations

Actualités de la communauté l’Hémiplégie Alternante

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    Profiles of blood biomarkers in alternating hemiplegia of childhood - Increased MMP-9 and decreased substance P indicates its pathophysiology.
    News, publié il y a environ 1 mois

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    Alternating hemiplegia of childhood (AHC) is a rare disorder characterized by repeated plegic attacks, movement disorders, autonomic phenomena, and developmental delay. To obtain insights into the pathophysiology of AHC, we..

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    Clinical features of nine patients with alternating hemiplegia of childhood
    News, publié il y a 3 mois

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    Abstract

    Aim: To define clinical features of patients with alternating hemiplegia of childhood.

    Methods: We retrospectively reviewed the clinical presentation and course of the disease in patients diagnosed between January 2003 and December 2008 at the Pediatric Neurology Department of the Istanbul Medical Faculty. Results: The nine patients had a mean age of 6.6 months (2-15 months) at the onset of symptoms. Paroxysmal eye movements were the early symptom of five patients. All patients had recurrent alternating hemiplegic episodes and relief of symptoms while sleeping. Duration of events varied widely from few minutes to several days and was associated with slowly progressive neurological deterioration. Flunarizine might decrease frequency of events but is not effective to neurological deterioration. Amantadine as an alternative agent is used in add-on therapy, but epileptogenic side effect prevented the evaluation of long-term efficacy. Conclusion: Trials on new agents like amantadine are necessary for more effective control of the disease.

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    Il meeting annuale sull'emiplegia alternante
    News, publié il y a 3 mois

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    L'emiplegia alternante (AHC o sindrome di emiplegia alternante) è una rara malattia neurologica, con manifestazioni parossistiche molto invalidanti, le cui cause sono ancora sconosciute e per la quale non esiste una cura. Attualmente i casi conosciuti in tutto il mondo sono circa 500, 45 dei quali italiani.

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    I.B.AHC Biobank and Clinical Registry for Alternating Hemiplegia
    News, publié il y a 5 mois

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    I.B.AHC is composed of two main repositories, the Clinical Registry and the Biological Bank (Biobank), designed to collect, organize, keep and share both the clinical data and the biological samples (DNA, RNA and Cellular Lines) of the patients affected by AHC.

    Thanks to I.B.AHC, the collected clinical data and biological material are available for any scientifically valuable and non duplicated study and research on AHC.

    For further information, please contact [email protected]

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    Kiley Smiles Through Rigors of Rare Disorder
    News, publié il y a 6 mois

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    In other ways, Kiley is practically unique;  she suffers from Alternating Hemiplegia of Childhood (AHC), a neurological disorder that’s so rare there are just three or four other children in the surrounding area who are afflicted with it.

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    AHC Sodium Oxybate Trial
    News, publié il y a 6 mois

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    The goal of this study is to evaluate whether the study drug can safely and effectively decrease AHC episodes and improve the quality of life of individuals with AHC.

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    AHC Registry Announcement
    News, publié il y a 6 mois

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    You are asked to enroll in the AHC Registry so that we may quickly and efficiently contact you in the future with information about new treatments for AHC, or about studies for which you may be eligible.

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    AHC Medical Questionnaire Announcement
    News, publié il y a 6 mois

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    The primary benefit is to gain knowledge regarding the characteristics of AHC in children and adults.  There is no immediate personal benefit to you for participating in completing the AHC Questionnaire. However, we hope that information gained will help us in our search for effective therapies in AHC.  Risks include the very small risk of loss of confidentiality that results from any activity involved in disclosing personal information.  You will be asked to submit the AHC Questionnaire once, but we may need to update it in the future. This will involve a minimal time commitment on your part.

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    AHC Daily Episode Log Announcement
    News, publié il y a 6 mois

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    This research is being done to investigate the effectiveness and use of therapies being used to shorten the duration of AHC episodes.

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    Absence of Mutation in the SLC2A1 Gene in a Cohort of Patients with Alternating Hemiplegia of Childhood (AHC).
    News, publié il y a 7 mois

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    Abstract

    Alternating hemiplegia of childhood (AHC) is a rare neuropediatric disorder classically characterized by episodes of hemiplegia developing in the first months of life, various non-epileptic paroxysmal events and global neurological impairment. If the etiology is unresolved, the disorder is highly suspected to be monogenic with DE NOVO autosomal dominant mutations. A missense mutation in the SLC2A1 gene encoding the facilitative glucose transporter-1 (GLUT1) was recently described in a child fulfilling the existing criteria for the diagnosis of AHC, with the exception of age at onset, thus suggesting a clinical overlap between AHC and GLUT1 deficiency syndrome due to SLC2A1 mutations. We have studied a cohort of 23 patients to investigate whether patients with classical AHC harbor SLC2A1 mutations. Automated Sanger sequencing and MLPA analyses failed to detect any SLC2A1 mutations in the 23 patients analyzed, thus excluding mutations of this gene as a frequent cause of classical AHC.