Monday, October 3, 2016

Fighting For Cannabis-Based Medicine

AVA BARRY HAS Dravet syndrome, an extremely rare, drug-resistant form of epilepsy

The six-year-old suffers from several seizures every day, many of them violent. Several types of pharmaceutical medication have failed to improve her condition and she frequently has to spend time in hospital.

Her parents Vera Twomey and Paul Barry believe there is one thing that can help her: cannabidiol (CBD) oil, a form of medicinal marijuana.

Earlier this year, doctors told them they have run out of pharmaceutical options, but could try some of the failed medicines again in different formats.

In response, they set up an online petition calling for CBD oil to be legalised in Ireland. It is available in some countries and certain states in the US.

The petition, which had over 11,600 signatures at the time of publication, will be sent to Health Minister Simon Harris. A previous version was intended for his predecessor Leo Varadkar.

Dravet syndrome is extremely rare, affecting about one in 20,000 births, and causes regular and prolonged seizures.

When Ava was diagnosed her parents were told she would not walk or talk, but she has defied the odds in this regard and now attends school. However, her condition means she regularly misses days.

“At the moment, if we got Ava to go to school two days a week you’d be concerned she’d not be able to do three, we’re thrilled if she does three. Last year she got to school five days a week just twice.

“I can’t tell you, how badly she wants to go to school, how annoyed she is at me when she can’t go,”
It’s not uncommon for Ava to have up to 12 tonic-clonic seizures a day, where she falls to the floor and shakes violently.

Vera says she also often gets 100 or more ‘absences’ a day and myoclonic jerks, like the jerks people sometimes get before falling asleep.

“They’ve never gone away. We’re still struggling, she’s still having seizures. She’s still going through an awful lot. I’m still very, very worried about her that she might not come out of one of the seizures.

Vera is in contact with a number of parents in other countries whose children have a much better quality of life since they got access to CBD oil.

She says she is aware of one girl from the US whose seizures have reduced from about 300 a month to just three.

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