Epilepsy support line to connect remote Tasmanian patients to help

Epilepsy Tasmania says a new telephone service will provide vital support for many people living with the disorder in remote parts of the state who cannot drive to face-to-face meetings.

The peer supporter service was launched in Hobart today and will connect people affected by epilepsy to trained volunteers also affected by the disorder.

Epilepsy Tasmania chief executive officer Wendy Groot said the service was the first of its kind relating to epilepsy in the world.

She said face-to-face support groups were run in Hobart, Launceston and Burnie, but people who lived outside those centres were missing out.

"A lot of people [with epilepsy] do not have a licence, so this enables them to make a phone call to be able to talk to somebody in their location rather than be isolated and alone," Ms Groot said.

"If you are living remotely and you are isolated, one of the biggest issues is people living with epilepsy can be four times higher across the population in terms of developing anxiety and depression.

"It helps them connect with people and understand that they are part of a community and not completely isolated in their patch."

Ms Groot said they hoped the service, Epilepsy Connect, would be picked up by other states.

Trained volunteers 'with shared experience'

Epilepsy Connect volunteer Katie Dineen was diagnosed with the disorder about five years ago after a seizure.

She said at the time she did not have anyone to talk to who understood and shared the experience.

"It was an enormous shock, a giant change in life," Mrs Dineen said.

"I was in my mid-30s, living life, two kids, working, and it turned everything upside down for me."

Mrs Dineen said she had "come to this point in my journey now where I hope I can contribute something, if [people with epilepsy] want to talk to somebody who has a shared experience".

"I want to be able to sit and listen and talk and have people share their experience with me."

All of the volunteers have been trained to provide telephone-based peer support and are backed by a team of health professionals.

The service was developed in partnership with the Centre for Rural Health and the University of Tasmania and is funded by a Tasmanian Community Fund grant.

Article Resources:http://www.abc.net.au/

Do You Suffer From Epilepsy? Learn How Cannabis Is Better!

Do You Suffer From Epilepsy? Learn How Cannabis Is Better!

Cannabidiol, a natural oil derived from marijuana plants, may be the key to helping millions of patients manage epilepsy. Approximately 1 out of 26 Americans have or will develop epilepsy during their lives. Seizures account for 34% of all sudden deaths in children. Still, available treatments are limited. Drug therapy is the most common choice and it involves taking anticonvulsant medications with often severe and debilitating side effects. The alternative is brain surgery, which is dangerous and expensive, with no guarantee of improvement. Many patients are turning to cannabis as a safer, more natural treatment for seizure disorders, especially in children.

Cannabidiol (CBD) is a naturally occurring oil with powerful anticonvulsant properties and significantly less side effects than traditional pharmaceutical drugs. In fact, cannabis has been used for thousands of years to treat epilepsy and other diseases. GW Pharmaceuticals has recently developed a drug called Epidiolex, which is a purified extract of marijuana in oil form. It is currently being tested on children with treatment-resistant epilepsy. During one study, 137 children and young adults with epilepsy were put on Epidiolex for 12 weeks. They saw a54% average decrease in seizures after just 3 months of therapy.

The evidence supporting CBD for epilepsy in children is so strong that many families are relocating to states where medical marijuana is available. Research still needs to be completed for both children and adults, but studies are limited because marijuana remains on the FDA's Schedule 1 drug list. Schedule 1 drugs are described as having "no currently accepted medical use". The US government still does not acknowledge that medical marijuana could be used as a treatment for disease. Until federal law changes, large-scale research cannot legally be conducted.

Adults with epilepsy could also benefit from access to medical marijuana and CBD. An estimated 440,000 soldiers who fought in Iraq and Afghanistan suffered traumatic brain injury, which could lead to a condition known as Post-Traumatic Epilepsy (PTE). They deserve to have access to medical marijuana and other cannabis-based treatments. It's time for the FDA to change their regulations on marijuana so that the medical community can perform open, large-scale research on it's effects and benefits.

Fortunately, individual states have passed laws allowing the use of medical marijuana and cannabidiol, so many families with sick children are getting access to the drug already. Eight-year old Charlotte Figi is one of these children. She suffers from Dravet's Syndrome, a rare disorder which can cause hundreds of seizures per day in children. The popular strain known as Charlotte's Web contains a low THC content, but is high in CBD, and was named after her because of her enormous improvement from cannabis-oil treatment.

Not all kids are as lucky as Charlotte. Families whose children are suffering from epilepsy are not always free to move and many parents have resorted to smuggling CBD into their home states so that their children can get the treatment they need. Epilepsy costs the US $15.5 billion dollars a year, yet the treatments available are dangerous and often ineffective. Seizure sufferers deserve hope and access to safe treatment.

Article Resources:http://medicalmarijuanahelp.com/

Marijuana Extract May Help Some Children With Epilepsy, Study Finds

A strain of high-cannabidiol marijuana is used to create extracts used in experimental epilepsy treatments.

Parents of children with severe epilepsy have reported incredible recoveries when their children were given cannabidiol, a derivative of marijuana. The drug, a non-psychoactive compound that occurs naturally in cannabis, has been marketed with epithets like Charlotte's Web and Haleigh's Hope.

But those parents were taking a risk; there has been no clinical data on cannabidiol's safety or efficacy as an anti-epileptic. This week, doctors are presenting the first studies trying to figure out if cannabidiol actually works. They say the studies' results are promising, but with a grain of salt.

The largest study being presented at the American Epilepsy Society meeting in Philadelphia this week was started in 2014 with 313 children from 16 different epilepsy centers around the country. Over the course of the three-month trial, 16 percent of the participants withdrew because the cannabidiol was either ineffective or had adverse side-effects, says Dr. Orrin Devinsky, a neurologist at the New York University Langone Medical Center and lead author on the study.

But for the 261 patients that continued taking cannabidiol, the number of convulsive seizures, called grand mal or tonic-clonic seizures, went down by about half on average. Devinsky says that some children continued to experience benefits on cannabidiol after the trial ended. "In the subsequent periods, which are very encouraging, 9 percent of all patients and 13 percent of those with Dravet Syndrome epilepsy were seizure-free. Many have never been seizure-free before," he says. It's one of several papers on cannabidiol being presented this week at the American Epilepsy Society meeting in Philadelphia.

Twenty-five of those patients were followed for a yearlong study also presented at the meeting. Some of those patients did better, but one ended up doing worse. "A drug can induce an increase in seizures," says Dr. Maria Roberta Cilio, a pediatric neurologist at UCSF Benioff Children's Hospital who led that study. This happened with one of her patients. "For one particular child, the more the dose of [cannabidiol] was increasing, that increase was paralleled with an increase in seizure frequency," she says.

Some patients in Devinsky's trial also did worse while on cannabidiol, but he thinks there's no way to tell if it was because of the drug or something else. He says we won't know until a full clinical trial has run its course. Without that, the perceived effects of the drug might be a placebo effect or it could be some other confounding factor that hasn't been caught in the study. What's more, a few hundred patients isn't a lot of patients, and doctors still need to see what will happen when a patient is on cannabidiol for more than a few months.

Epilepsy can be one of the most difficult syndromes to treat. About a third of patients have an intractable form of epilepsy. It's common for children and adults with treatment-resistant epilepsy to exhaust the list of anti-seizure medications to little or no effect.

Jaren Hansen is a 7-year-old boy with Lennox-Gastaut Syndrome, a form of treatment-resistant epilepsy. When he was 2, he started having seizures. His doctors diagnosed him with epilepsy and started him on one anti-seizure medication. Then they added another, and then another.

Article Resources:http://www.npr.org/