Dravet syndrome community

Dravet Syndrome is one of the most catastrophic epilepsies and is a rare neurological condition causing severe, difficult to control seizures alongside developmental delay. 

Braxton's Story for Piper's Song by Dravet Syndrome Foundation published 5 days ago

 


A family's story of their journey with Dravet syndrome created by the Ried family for the Dravet Syndrome Foundation.

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Melorah by JenniferMcM published 10 days ago

Melorah is our second child. She was greatly anticipated as there is almost five years between her and Amelia, our oldest. We hit a few bumps with Melorah during her first year. First, there was a dairy allergy. Then there was a febrile seizure at 5 months, with subsequent seizures following. Melorah had an EEG and a visit with her first neurologist. We were told not to worry, she would grow ou...

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Aimee’s Story by Anon published 18 days ago


Aimee, was born in September 2005 and for the first few months of her life appeared completely normal, however, this all changed just before she was 4 months old when she had the first of what would be many, many seizures. 
This particular seizure lasted 45 minutes and resulted in her being intubated and retrieved by Guys and St Thomas’s paediatric paramedics. We were blue-ligh...

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HARLEY - Living with Dravet Syndrome by Dawn published 18 days ago


Harley was born on 21st June 2005. Unlike his sister Hannah who was 7 weeks premature Harley was full term and apart from having a venous delivery and needing physio for a few weeks due to his foot being bent backward in the womb everything else was fine for the first few months.
All this changed in November 2005 on our first family holiday abroad to France. Harley had received his vaccin...

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Patient groups

  • Dravet Syndrome Foundation

  • Dravet Syndrome UK

  • Dravet.org

More information about these groups

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Dravet syndrome Recent Activity

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    Parents of epilepsy boy put hope in new centre
    news, published 3 days ago

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    Muir was eventually diagnosed with severe myoclonic epilepsy, also known as Dravet’s Syndrome, and the news meant the family’s hopes for him – that he would have a normal life – were dashed.

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    Hi!
    topic, published 16 days ago

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    I am mom to Melorah Grace (age 11). My husband and I are founding members (john is a founding board member) of dravet.org, formally the IDEA League. It was the first non-profit Dravet group. Melorah wasn't diagnosed until Dr. Dravet saw her at the first Dravet conference in August of 2006. D...

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    Hello,
    topic, published 16 days ago

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    My name is Mary Anne Meskis. I am the Vice-President of the Dravet Syndrome Foundation based in the US, www.dravetfoundation.org. My youngest son, Elliot has Dravet syndrome.

    I am happy to share our experience in living with Dravet syndrome and look forward to speaking with other families. ...

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    Greetings from Spain
    topic, published 16 days ago

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    Hi there,

    My name is Julian Isla. I'm President for Dravet Syndrome Foundation in Europe.
    http://www.dravetfoundation.eu

    I'm parent of a child affected with this disease as well. His name is Sergio and you can learn more about his condition over http://www.xergio.org

    Regards,

    julian...

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    Welcome
    topic, published 16 days ago

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    Hi, and thanks for registering on the Dravet syndrome Community. My name is Rob and I am one of the community managers at EURORDIS. We are here to support you and answer any questions you may have.

    This forum section can be translated on demand across all of the community's 5 languages. If you...

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    Causative Gene May Differ Among Patients With Dravet Syndrome
    news, published 18 days ago

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    Dravet syndrome is a severe genetic epilepsy that appears early in life. About 75 percent of cases can be attributed to mutations in the SCN1A gene encoding the sodium channel NaV1.1.

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    Bringing Us Closer to a Cure: 2011 Highlights of Dravet.org
    document, published 24 days ago

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    Dravet.org is grateful to everyone who supported our work with our children and families this past year as we seek to find a cure for Dravet syndrome and the related epilepsy spectrum.

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    A snapshot to cherish
    news, published about 1 month ago

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    Sage and Willow, 12, who had a rare metabolic disorder with similar symptoms to cerebral palsy, had a close friendship with Ms Paynter's youngest daughter, Jasmin, 7, who has Dravet Syndrome, a rare form of epilepsy.

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    Dravet Syndrome UK Leaflet
    document, published about 1 month ago

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    Understanding Dravet Syndrome

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    Le syndrome de Dravet (FR)
    document, published 2 months ago

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    Epilepsie myoclonique sévère du nourrisson EMSN (2011)