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Creating connections the key gain for family attending Dravet conference

October 4, 2012

Sometimes you can feel alone when your child is living with a seizure disorder, but when you meet others going through the same issues and challenges as your family, the burden can feel a little lighter.

This is the experience Andy and Dawn Bellefeuille say they walked away with from Dravet.org’s recent 2012 biennial conference in Minneapolis.

Dawn and Sean Bellefeuille

Having this connection with other families was a vital part of the experience for the couple, whose eight-year-old son, Sean, has Dravet syndrome.

“To me, that’s an ace in your pocket knowing that you’re not alone,” says Andy.

The Bellefeuilles, who are from the Ottawa area and were joined in Minneapolis by their neurologist, say they met parents of other children with Dravet syndrome from across Canada and around the world. The couple is now keeping in contact with the other families via e-mail and Facebook.

“Every once in a while, when you don’t hear from somebody for a while, you say, ‘Hey, is everything OK?’ ” says Dawn.

In fact, during the conference, called Advancing Research and Enhancing Comprehensive Care: Progress for Patients with Dravet Spectrum Disorders, the Bellefeuilles were introduced to two other Ottawa-area families they had never met before. One of the fathers actually works next door to Dawn, in a surprising coincidence.

“That alone was worth it; just the personal contacts we made,” she says.

The benefit of having made these connections, says the couple, is that they now have a tighter network of people who understand the issues they’re facing. They can also share information important to parents of children with Dravet syndrome, they say.

In fact, as a show of support for one another, the Bellefeuilles were joined by the other Ottawa-area families in a Sept. 29 walk to raise money for the Dravet Syndrome Foundation.

The walk was organized by the board for Dravet.ca, an online portal a group of parents with children who have Dravet syndrome is trying to launch as a sister site to the U.S.-based Dravet.org.

Sessions at the conference included identifying Dravet syndrome, information about genetic factors to the disorder, seizure management, and cognitive and behavioural development in children with Dravet syndrome.

If you have feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca, or leave a comment below.

Writer: Deron Hamel

Pulling together to support Epilepsy Durham Region

September 27, 2012

Epilepsy Durham Region executive director Dianne McKenzie says the agency’s Sept. 29 Pull Together for Epilepsy event carries great symbolism, that of a community coming together, standing side by side in support of people living with epilepsy.

Held in conjunction with Clarington’s Family Safety Day, an annual event featuring several interactive exhibits focused on public safety, Pull Together for Epilepsy, a fire-engine pull, will be the final event of the day.

Family Safety Day is being held at the Garnet B. Rickard Recreation Complex in Bowmanville from 10 a.m. to 4 p.m. The fire-engine pull is being held at Clarington Fire Station No. 1, located on-site.

This is the first time a Pull Together for Epilepsy event has been held. Pull Together for Epilepsy will feature 10 teams of 10 people pulling a fire engine provided by the local fire department.

“I think the important part of this is the symbolic aspect,” says McKenzie.

“The entire community is coming together to pull. . . . Many of these people have no personal connection to epilepsy but they’re coming for the symbolism.”

Along with the important symbolism, McKenzie says the public attention garnered from the event will help raise awareness of epilepsy and Epilepsy Durham Region, which is now in its 25th year. In fact, there will be about 7,000 people at Family Safety Day who will be positioned to get the message.

“(Family Safety Day) is already big, so we have dovetailed with this event, and we’re building on the excitement that’s already surrounding Family Safety Day, (and) people are very excited to hear that we’re pulling a fire truck,” says McKenzie.

“The word ‘epilepsy’ is going to be repeated over and over in a fun, family environment — it’s not something negative.”

Epilepsy Durham Region outreach co-ordinator Jessica Scheffee adds that people living with epilepsy often “feel alone,” but an event like this shows there’s a community behind them.

“By bringing people together and supporting (people with epilepsy), it shows them they have a connection to other people in the community,” says Scheffee.

Money raised by the teams will go towards Lora’s Legacy Fund, which helps Epilepsy Durham Region empower people living with epilepsy. Epilepsy Durham Region is aiming to raise $25,000, and $12,500 of that has already been raised in pennies.
Even if people don’t want to pull the fire engine, they can still make a difference by coming out to cheer teams on and learn more about Epilepsy Durham Region and Clarington Emergency and Fire Services at Family Safety Day, says McKenzie.

Epilepsy affects one in 100 individuals and 36,000 in Durham Region, according to Epilepsy Durham Region.

For more information about the event, please contact McKenzie at 905-430-3090, or visit www.epilepsydurham.com.

If you have feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca, or leave a comment below.  

Informative VNS webinar Sept. 21

September 20, 2012

Dr. Cristina Go, a neurologist at Toronto’s Hospital for Sick Children and an epilepsy expert, is presenting at a Sept. 21 webinar that will provide in-depth information about vagus nerve stimulation (VNS) devices and how they can enhance quality of life for people living with seizure disorders.

The webinar, entitled Vagus Nerve Stimulation: A Long-term Solution to a Life-long Disorder, will focus on how VNS devices work and the surgery involved, and she will also discuss clinical results and potential side effects from having the implants. Her presentation will be followed by a question-and-answer session.

The session is meant to engage people who have a seizure disorder and are interested in learning about what a VNS device can do for them, as well as parents and caregivers of people living with seizure disorders.
“The webinar is aimed towards people who might be interested in VNS as an option for treatment for their epilepsy, and for patients who might already have the device but have more questions,” says Go.

VNS devices can prevent or reduce the impact of seizures by sending small electrical pulses to the brain via the vagus nerve. The device is planted under the skin, near the collarbone.

“The vagal nerve stimulator is just another option that we can offer for patients who have epilepsy and nothing else has helped,” says Go.

Go says there are three main groups of people living with seizure disorders who can benefit from VNS: people who have seizures that cannot be controlled by medical management, people who are not surgical candidates and people who might benefit from being on the ketogenic diet.

The neurologist will also discuss side effects associated with VNS, and talk about what can be done when the patients are having side effects before they go to hospital.

While VNS devices have the capacity to enhance quality of life for some people living with seizure disorders, Go stresses they should not be considered a substitute for medication.

Go will also talk about safety issues surrounding VNS devices, such as air travel and even iPads.

“IPads have a strong magnet so some people are questioning if it could activate the device, and I will be talking about this in the webinar,” she says.

The webinar is being held Friday, Sept. 21 from 3:30 p.m. to 4:30 p.m. Click here to register.

If you have feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca, or leave a comment below.  

Writer: Deron Hamel

Travel Assisstance

September 14, 2012

There are travel assistance options when living with epilepsy.

The Northern Travel Grant

The Northern Travel Grant is offered through the Ministry of Health and Long-Term Care.  It helps to defray the costs of travel for Northern Ontario residents seeking medical specialist services or procedures at a designated health facility.

Click to download printable brochure on Northern Health Travel Grants.

Click here for more information.

 

Hope Air

Hope Air arranges free flights for Canadians who are in financial need and must travel to healthcare. Hope Air is the only registered, national charity that provides free flights to people who cannot afford the cost of an airline ticket to get to medical expertise or specialized medical technologies that usually exist only in larger urban centres.

Hope air is unique among Canadian charities in what they offer as they are “not an airline, but a lifeline“.

Click here to learn more about Hope Air.