Communauté l’Hémiplégie Alternante

Le syndrome de l’Hémiplégie Alternante est un maladie neurologique rare.

L'association familiale italienne l'Hémiplégie Alternante se réunit à Rome les 26 et 27 mars 2011 par Siggi il y a 3 mois


La rencontre a eu lieu à l'hôtel Summit aux alentours de Rome, ce qui correspondait tout à fait aux besoins de cette réunion de famille. L'hôtel est grand, le personnel aimable et il y a des accès handicapés. La réunion s'est déroulée dans une pièce, l'examen médical dans une autre, et il y avai...

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Sunna Valdis par Siggi il y a 3 mois


Sunna Valdis was born after a normal pregnancy on 9th of February 2006. She weighed 3750 gr and was 52 cm.
She was very quiet and slept very well.
At 3 months we noticed some abnormal changes in Sunna. There were very characteristic eye movements from time to time. We took Sunna to an eye specialist in June 2006 and her sight came out normal. Nothing unusual exept the eye jerks. “...

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Vidéo: USA Fondation AHC (EN) par Jeff W. il y a 3 mois


Jeff Wuchich, président de la Fondation AHC, présente une vision pour l'avenir ...
Plus d'informations sur les activités de la Fondation AHC peut être trouv&...

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L'histoire de Matthieu et ce qu'il espère pour l'avenir par AHC Kids il y a 4 mois


Notre parcours vers le diagnostic de l'AHC, et ce que nous faisons pour nous adapter aux changements !
Imaginez que votre enfant perde tout à coup l'usage d'un ou de plusie...

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Associations

  • AHC Assoc. Iceland

  • A.I.S.EA

  • AESHA

  • AHC Foundation

Voir tous les groupes de patients

Filtres

Activité récente dans la communauté l’Hémiplégie Alternante

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    Vivint Gives Back contest. Win Grant Money for AHCF!!
    topic, publié il y a 11 jours

    Voir la transcription

    Hello AHCF Families and Friends,

    We need your help to vote every day in the Vivint contest to win $250,000.00 to further research into AHC, develop treatments and trial medications, teach the public and professionals about AHC and ultimately find a cure! You have to be on Facebook to participa...

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    Long period of episodes
    topic, publié il y a 28 jours

    Voir la transcription

    I want to know if you have had the same experience as we have. Our daughter Sunna has had 2 periods of episodes that last for 12 days. Once when she was 2 year old and then again when she was 5. Please tell me if you have had the same experience and how far apart were the periods?
    Best regard...

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    AHC family meeting in Raleigh, North-Carolina
    topic, publié il y a environ 1 mois

    Voir la transcription

    AHCF (US organization for AHC) is hosting a family meeting in Raleigh, North Carolina in July 2011. More information is to be found here: http://ahckids.org/index.php?option=com_content&view=article&id=63&Itemid=63

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    Oxibato de Sodio
    topic, publié il y a environ 1 mois

    Voir la transcription

    Hello friends,
    Is anybody in this community taking Sodyum Oxibate?
    Do you have any information about a study on the medicine that Dr. Swoboda's team was carrying out?
    Regards,
    Rafi

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    New article on medication for treating AHC
    topic, publié il y a environ 1 mois

    Voir la transcription

    Article called:
    Alternating hemiplegia of childhood: successful treatment with topiramate and flunarizine, a case report.

    Abstract online here:
    http://www.ncbi.nlm.nih.gov/pubmed/21575320?dopt=Abstract

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    Profiles of blood biomarkers in alternating hemiplegia of childhood - Increased MMP-9 and decreas...
    news, publié il y a environ 1 mois

    Voir la transcription


    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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    Drugs used during episodes
    topic, publié il y a environ 1 mois

    Voir la transcription

    I have noticed that parents are using different drugs while the episode in ongoing or afterwards. We have been using Chloral Hydrate, rectally, when our daughter has an episode. She will got to sleep for 8-12 hours and when she wakes up she will have no sign of hemiplegia.
    What is your experie...

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    Type of episodes
    topic, publié il y a environ 1 mois

    Voir la transcription

    I am wondering what type of episodes you child has. Sunna, my daughter, has hemiplegic ones where she just goes limp on one side without any signs of pain. Then she has episodes where she feels a lot of pain and also goes limp on one side. Sometimes she is screaming with pain. What has been yo...

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    Update on Pepsi Challenge Grant Award
    topic, publié il y a environ 1 mois

    Voir la transcription

    Hi,

    As a new fundraising push from the AHC Foundation in the US begins, Sharon, from the AHC Foundation offers a quick summary on the Pepsi Challenge Grant award that was partially received already.

    Over to Sharon, "We received the first half of the $250K from Pepsi in January. Dr Swoboda's...

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    New Opportunity to vote for an AHC project...
    topic, publié il y a environ 1 mois

    Voir la transcription

    From Sharon at the AHC Foundation:

    AHCF Families and Friends,

    Are you Ready to start voting for grant money again?

    Many people have wondered if we were going to enter Pepsi again. They have changed the contest and makes it an unlikely fit for us however Jeff has found us this opportunity...