From the [UK] Times:

A leading geneticist writing in the journal Nature predicts a dramatic increase in parental demand for genetically screened “designer babies” over the next decade.

David Goldstein of Duke University expects to see many more couples screening embryos for genetic variations that substantially raise the risk of common conditions like diabetes, heart disease, autism, schizophrenia and epilepsy.

Embryo screening, which involves pre-implantation genetic diagnosis, is currently used to identify mutations that lead inevitably to serious disease, like cystic fibrosis. Wider use of the process could encourage fresh controversy over the ethics of designer babies, as it would involve screening out embryos that have an elevated risk of developing disease but are otherwise healthy.

In his Nature article, Goldstein called for a broad public debate about the ramifications of widespread genetic screening. “We should think about an appropriate dividing line,” he told the Times. “Most people are in favor of allowing this when a disease is severe, but are more uncomfortable with marginal disease risks. It’s something we are going to have to think hard about.”

Writing in the Chicago Tribune, Parade Magazine publisher Randolph Siegel lists a few examples of the ways in which people with cognitive impairments are ridiculed in the national media. Here’s just one: A leading character on HBO’s “Curb Your Enthusiasm seduces a character with an intellectual disability, then belittles his victim when she speaks out. “I cringe when I see snark like this,” Siegel says. An excerpt:

Call me overly sensitive. Accuse me of being humorless. Say whatever you want. But if the true measure of a society is how it treats its most vulnerable citizens, then these mean-spirited attacks are not only indefensible, they reinforce the intolerance and discrimination that these children and adults often face in their schools, communities or workplaces. I had never met a “retard” until my daughter was labeled one after untreatable epilepsy ravaged her cognitive development.

… Over the years, I’ve bit my tongue whenever I hear “retard jokes” at business functions — or see a movie like DreamWorks’ “Tropic Thunder” in which “retards” are vulgarly disparaged in a lame effort to generate laughs — or hear a song like the Black Eyed Peas hit single “Let’s Get Retarded.” Even when President Barack Obama described his subpar bowling skills by making an insensitive joke about the Special Olympics on “The Tonight Show with Jay Leno”, I tried to internalize the pain. But that’s a losing strategy and no longer justifiable.

As Americans with intellectual disabilities are increasingly stigmatized and dehumanized in our media and popular culture, it’s time — now more than ever — for their families and friends to help them fight back.

Earlier post: Daughter with epilepsy needs more than hugs — ‘My Turn’ column by Randy Siegel in Newsweek

See also: Our seizure nightmare, by Randolph Siegel in the Chicago Tribune

(Photo from website of Citizens United for Research in Epilepsy)

Charities raised objections when Rita Marcalo got a grant to explore her epilepsy on her own terms

From the Yorkshire [UK] Post, [UK] Times:

Performance artist Rita Marcalo said she felt “guilty that I had perhaps short-changed people” when she failed to induce a seizure on stage as she had hoped, but pleased that her efforts had provoked a public discussion of epilepsy, disability and art in Britain.

Marcalo’s work, called Involuntary Dances, had received a grant of  £14,000 from Arts Council England, and drew criticism from epilepsy charities who said it was dangerous and turned epilepsy into a “freak show.”

The artistic director of a dance company who has had epilepsy for years, Marcalo tried to induce a seizure by ceasing her medications, drinking wine, looking at strobe lights, eating dark chocolate, and depriving herself of sleep. Audience members were urged to document her seizure with their cellphones.

See also:

Epilepsy as live art isn’t controversial — By Allan Sutherland Friday on the [UK] Guardian Theatre Blog. An excerpt:

What Marcalo’s piece highlights is that adults with epilepsy own their own bodies and have a right to choose what to do with them. It illustrates that we are able to speak for ourselves, and don’t need charitable organisations to step in on our behalf. (It’s extraordinary that this is still an issue.)

She is also saying that there are worse things than having an epileptic fit. Several hundreds of thousands of us in this country live with epilepsy in one form or another, and our lives are not blighted … Marcalo’s performance will implicitly say: “It’s just a fit. Get over it.” She speaks for us all.

Dangerous myths about epilepsy — By Dr Sallie Baxendale, BBC. An excerpt:

While certain circumstances may conspire to make a seizure more likely, few reliably trigger seizures in the majority of people with epilepsy.

And there’s the rub.

Living with epilepsy is as much about living with the unpredictability of seizures and not knowing when and where they might occur, as coping with the seizures when they do happen.

In the end it may be Ms Marcalo’s failure to have a seizure on cue that teaches us more about the condition than a public seizure ever could.

Understanding epilepsy: One woman’s story — From the Times Herald-Record, Hudson Valley, NY

From 60 Minutes, AP, Chicago Sun-Times:

Senior presidential adviser David Axelrod and his wife Susan appeared on 60 Minutes yesterday to talk about their family’s 28-year struggle with epilepsy.

Daughter Lauren is one of three million Americans living with the disease.  — more than the number of Americans who have Parkinson’s, cerebral palsy and multiple sclerosis combined. About a third of them don’t respond to treatment.

“Epilepsy is like terrorism of the brain. You don’t know when it’s going to strike, where you’re going to be,” David Axelrod told correspondent Katie Couric.

Axelrod and his wife are part of a movement that is trying to jumpstart research to find a cure. They say the disease is not getting the attention it deserves.

See also:

Axelrod remains mindful of daughter with epilepsy — AP

Axelrod’s daughter: ‘Why does Obama need so much help?’ — Chicago Sun-Times

Previous posts here.

(Photo from 60 Minutes video)

From the Orange County Register (with video):

A recent policy change by California’s nursing board is endangering the lives of students by withholding medication needed to quell potentially life-threatening seizures, say parents and epilepsy advocates.

A directive issued by the board last month says no school staff except registered nurses can administer Diastat, and that schools must call 911 for assistance if no nurse is available.

Orange County dad Pat DeLorenzo said he had been told that staff members at his daughter’s public school were trained to administer the medication. But the directive by the state Board of Registered Nursing meant that his 7-year-old daughter, Gianna (above), had to wait more than five minutes for paramedics when she had a seizure in class recently.  “My daughter could have been dead by then,” he said, noting that the seizure ended before emergency personnel arrived.

… A spokeswoman for the American Nurses Association says the state nursing board was simply affirming California laws that prohibit unlicensed individuals like school staff from practicing medicine – and trying to shield nurses from unwarranted liability.

… Medical experts and epilepsy advocates say that prohibiting non-licensed school staff from administering Diastat is dangerous because of the time it can take for paramedics to arrive on scene. In a worst-case scenario, a seizure that is not stopped in a timely manner with Diastat could cause permanent brain injury or even death, potentially in a matter of minutes.

,,, “We need to have a change in legislation so the misinterpretation (of state law) can go away,” said Judith Pennella, executive director of the Epilepsy Alliance of Orange County.

Orange County’s school districts employ only 249 nurses for nearly 600 schools. In the state of California, the ratio is 2,500 students per school nurse.

(Orange County Register photo)

From AP/Gainesville [FL] Sun:

Advocate Mike Coonan has launched an organization called “Left Behind in Florida,” to lobby for the more than 18,000 people in Florida waiting to receive services from the state’s Agency for Persons with Disabilities.

Coonan’s 26-year-old son has epilepsy and autism. He lives at home and works at a local supermarket with the help of a job coach and his family.

When Coonan, 64, and his family moved to Pensacola from Michigan in 2004, they were surprised to learn the state had a list, and more surprised to find out it could be years before families might receive services.

“We didn’t know we’d be left to fend for ourselves,” he said.

Coonan and his wife, Prudence, said they are not seeking help for their son while they are alive, but for other families who need help.

Earlier posts here.

A ‘Call to Action’ — Newsweek cover story by Jon Meacham, the magazine’s editor

Epilepsy in America is as common as breast cancer and kills as many people. Up to 50,000 Americans die each year from seizures and related causes. More than 3 million Americans are affected by epilepsy. Their mortality is two to three times higher — and the risk of sudden death is 24 times greater — than that of the general population.

Yet funding for epilepsy research lags far behind other neurological conditions, at $35 per patient annually (compared with $129 for Alzheimer’s and $280 for multiple sclerosis.)

“It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern,” Meacham says … “All of us must focus on understanding epilepsy. And then we must defeat it.”

Related first-person essay by Susan Axelrod, wife of senior presidential adviser David Axelrod. Their 27-year-old daughter Lauren was diagnosed with epilepsy at 7 months. (Family photo above.) An excerpt:

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