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 24 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 29 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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Elliot's Story by Mary Anne published about 1 month ago


Elliot was a full-term, healthy infant, born without any complications.
Elliot’s first tonic-clonic seizure was at 6 months of age, accompanied by a slight fever, and lasted 1 hour and 40 minutes. After all testing came back negative and he showed no residual effects, this event was deemed a febrile seizure and we were sent home. After his second t/c seizure, approximately 6-8 weeks...

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Ciara's Story by Lori published about 1 month ago


On January 13, 2005, we were blessed by the birth of our daughter Ciara (KEE-RA), a beautiful, perfect baby born without any obvious health issues.
Little did we know that at five and a half months, our world would change forever, marked by Ciara’s first grand mal seizure which lasted 25 minutes. Soon 100 myoclonic jerks per day, prolonged seizures and ER visits became a routine par...

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Dravet syndrome Recent Activity

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    Medical facts, fast
    news, published 10 days ago

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    A.J. was ultimately diagnosed with a rare genetic disorder known as Dravet Syndrome, caused by a mutation in the SCN1A gene, which normally forms sodium channels in the neurons of the brain. Sodium channels help generate action potentials, electrical signals that travel along neurons and allow...

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    Parents of epilepsy boy put hope in new centre
    news, published 22 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 about 1 month 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 about 1 month 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 about 1 month 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 about 1 month 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 about 1 month 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 about 1 month 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