Wife of key Obama aide shares family’s journey with epilepsy

By Melissa Fay Greene in Parade magazine:

When 27-year-old Lauren Axelrod was diagnosed with epilepsy as an infant, her parents Susan and David were given scant information about the condition that was triggering dozens of brain-damaging seizures a day. They didn’t know the seizures would resist all efforts to control them, that available drugs caused devastating side effects, and that there was little ongoing research to help the 50 million people worldwide who share Lauren’s diagnosis.

In 1998, Susan Axelrod joined with other mothers to form the nonprofit organization Citizens United for Research in Epilepsy (CURE). Over the past decade, the group has raised $9 million for research and has changed the scientific dialogue about epilepsy.

David Axelrod was the chief strategist of the Obama campaign, and now serves as senior White House adviser.

“Complete freedom from seizures — without side effects — is what we want,” Susan says. “It’s too late for us, so we committed ourselves to the hope that we can protect future generations from having their lives defined and devastated by this disorder.”

Related stories from Parade about “heroic parents”:

• If the schools won’t help us, we have to help ourselves — Parents start a school for students with neurobiological and socialization disorders.
• Fighting a rare illness together — Parents start a foundation for research into Barth syndrome.
• Saving tiny hearts is what we have to do — Parents organize to fund research into congenital heart defects.

(Photo from Parade magazine)

From MarketWatch:

Vital Signs columnist Kristen Gerencher says a broad coalition of disability rights and business groups has come together behind a measure to revise the ADA in the wake of  a series of Supreme Court decisions that severely narrowed the law’s definition of disability. The ironic effect of those decisions, Gerencher says, is that the people who most need protections under the ADA often can’t get them.

An excerpt:

That means many people who suffer from a chronic disease but manage their illness well aren’t considered disabled and therefore aren’t covered by the law — even if an employer fires or refuses to hire them because of their disease.

The courts’ decisions have resulted in a Catch-22 for people with a range of disabilities, including diabetes, cancer, epilepsy, muscular dystrophy and mental illness, said Jennifer Mathis, deputy legal director for the Bazelon Center for Mental Health Law in Washington.

“You can be disabled enough to be fired but not disabled enough to sue,” she said.

From USA Today:

Tropical diseases commonly occur among poorer people in the U.S., leaving behind such lingering long-term problems as intellectual disability, heart disease and epilepsy, according to a report issued this week.

Study author Peter Hotez said the diseases go untreated in hundreds of thousands of poor people who live mainly in inner cities, the Mississippi Delta, Appalachia and the Mexican borderlands.

Hotez says it is a “disgrace” that diseases causing so much suffering remain at the bottom of the national health agenda.

“If this were occurring among white mothers in the suburbs, you’d hear a tremendous outcry,” says Hotez, a microbiologist at George Washington University.

From the [Sydney, Australia] Daily Telegraph (links below):

Australian television personality Paul ‘Fatty’ Vautin (left), host of a popular rugby program on MSN’s national Channel Nine network, stirred controversy last week with disparaging on-air comments about a hotel bouncer he said was drunk. The family of bouncer Greg Stacey said he has speech and learning difficulties caused by a disability related to epilepsy.

The network offered an apology, and Vautin said he would never deliberately ridicule a person with a disability because he had an older brother with Down syndrome. Then, in an ironic twist, Vautin’s brother with Down syndrome, Geoffrey Vautin, died Monday night after a short illness.

Stacey’s family said they intend to seek legal action against the network.

Another broadcaster and former “Footy” host says the show habitually targets people with disabilities and alcohol problems as the butt of ridicule.

• Footy Show makes disabled drunk slur
• Footy Show ‘seeks easy victims’
• Fatty’s Down Syndrome brother Geoffrey Vautin dies
• Bouncer’s family will still sue Fatty Vautin despite brother’s death

From the Associated Press on Foxnews.com:

Computer attacks typically don’t inflict physical pain on their victims. But in a rare example of an attack apparently motivated by malice rather than money, hackers recently bombarded the Epilepsy Foundation’s Web site with hundreds of pictures and links to pages with rapidly flashing images

The breach triggered severe migraines and near-seizure reactions in some site visitors who viewed the images. People with photosensitive epilepsy can get seizures when they’re exposed to flickering images, a response also caused by some video games and cartoons.

… “They were out to create seizures,” said Ken Lowenberg, senior director of Web and print publishing for the foundation.

WIRED.com called it “possibly the first computer attack to inflict physical harm on the victims.”

By the Associated Press in the New York Times:

Summer camps just for kids with chronic diseases are booming — places to learn about epilepsy or finally meet someone else with Tourette’s tics or slice open a cow’s heart to see what’s wrong with their own.

Now fledgling research suggests such special camps may offer more than a rite of passage these children otherwise would miss: They just might have a lasting therapeutic value.

… ”How do you live well with a chronic condition? I believe in part, the power of being amongst your peers normalizes the experience,” explains Sandra Cushner-Weinstein, a social worker at Children’s National Medical Center who founded the hospital’s weeklong camps for five illnesses, and is studying the impact on campers.

‘How I faced up to a deep-seated prejudice against disabled people’

[UK] Guardian columnist Stewart Dakers explores the complicated emotions he experiences when two acquaintances who have disabilities get married, buy a house and have a child. He describes Dave and Sue as having epilepsy and other conditions he doesn’t understand. “… A generation ago, they’d have been called ‘retards’.”

Dakers says he and other neighbors felt uneasy when the couple married, thinking it “improper, unseemly,” and “a step too far.” Their disapproval grew when Dave and Sue had a child. “No good can come of it … shouldn’t be allowed,” some said.

At this point, Dakers writes, he began to dislike Sue — and he sees that dislike as a positive development.

(more…)