A Call to Arms in the Epilepsy Fight

'The Mystery of Epilepsy': Readers hailed our April 20 cover story on epilepsy, a devastating, and often misunderstood, disorder. A teenager confessed to feeling "now more understood and most importantly, more normal." While others related tales of triumph and tragedy, all underscored the need for increased funding and research. As for the stigma factor, one reader admitted to "only recently coming out of the closet." One mom said it best: "My daughter has more spunk and courage than a combat unit. She also happens to have epilepsy."

Pondering a Mysterious Disease
There is no time for subtlety. Dr. Orrin Devinsky, who runs one of the largest epilepsy centers in the country, tells the truth about epilepsy in the hope of saving lives ("A Storm in the Brain," April 20). Devinsky has treated my 18-year-old son for two years now, and I leave the office in tears each time. Most of the discussion is heartbreaking—medications are unpredictable, with nasty side effects; seizures can cause brain damage, memory loss and even death; attempts to medicate and otherwise help may fail. Now millions of NEWSWEEK readers will feel the terror that patients and their families experience in dealing with this cruel disease. It's time to find a cure.
Name withheld
Montclair, N.J.

Eighteen years ago, when my daughter was diagnosed with infantile spasms (a catastrophic form of epilepsy), our well-intentioned pediatrician said, "Never use the word 'epilepsy.' Say she has a seizure disorder." Thank you, NEWSWEEK, for having this word on the cover and helping to negate the stigma.
Elizabeth Levine Wandelmaier
Mahwah, N.J.

While I play a fictional hero on NBC's "Heroes," my real hero is my 13-year-old son Jake, who just underwent brain surgery for his epilepsy. It is important for readers to know that the majority of people with epilepsy can achieve their dreams if they get the right treatment and we end the stigma that surrounds this condition. As my son plans his future, it is depressing that 25 percent of people with epilepsy who are capable of full employment are unemployed, often because employers don't understand and fear the condition. That is why I started TalkAboutIt.org, a Web site where stars like Jennifer Garner and John Mayer are encouraging people with epilepsy to be open about what they're going through. If we just talk about it, we can eliminate the mystery and fear.
Greg Grunberg
Los Angeles, Calif.

Immigrants with epilepsy face special hurdles that may go undetected. Though now discredited by our medical establishment, demonic possession continues to be a believable "diagnosis" for many people born outside the United States. As a hospital supervisor for bilingual/bicultural services, I must sometimes teach care providers about the gap between a patient's belief system and their own. If the patient and family members discard the notion that "witchcraft" or "punishment" has taken place, chances for a good outcome may increase.
Patricia Borgman
Santa Barbara, Calif.

My three children witnessed their mother's dozens of grand mal seizures 18 years ago. The trauma of those events frightened and scarred them. I wish I had recognized their pain earlier and gotten them counseling. I recommend that part of any epilepsy treatment include help for the immediate family, who are poorly equipped to deal with all the emotional issues that this illness brings with it.
Ron Bevan
Rockford, Ill.

As a former congressman who has suffered from epilepsy for more than 40 years, I have dedicated my life to representing the disabled community. While in Congress, I wrote the Americans With Disabilities Act to guarantee that others like me receive every possible opportunity we deserve. As our country works to reform our health-care system, I'm thankful that NEWSWEEK is taking the initiative to raise awareness on the complicated condition of epilepsy. I share many of the same experiences portrayed in the articles. We cannot allow "one size fits all" approaches to be taken when conducting research for the medications that have saved my life and will continue to save others.
Tony Coelho, Chairman
Partnership to Improve Patient Care
Rehoboth Beach, Dela.

On 'Obama Gets Gun-Shy'
"Heavens! How many guns and ammunition will help chest thumpers feel safe? My family hunts and feels no need for assault weapons. People with all these guns do not make me feel safe! They are downright scary."
Ann Omdahl,
East Grand Forks, Minn.

For the Record
As the primary developers of DUMBO, a neighborhood adjacent to the Brooklyn Bridge, we are incredibly sensitive to the importance of this iconic landmark. While we respect the scholarship, prominence and intelligence of David McCullough ("A Masterpiece in Jeopardy," April 27), his opinion piece about the bridge, in regard to our mixed-used residential project, Dock Street Dumbo, is not an accurate or fair representation of what we have proposed for the community we care so deeply about. In addition, the rendering created by project opponents and published by NEWSWEEK is incorrect architecturally and tremendously misleading. McCullough fails to note that while Dock Street Dumbo will indeed include luxury rental units, it will also include the area's first-ever affordable housing, as well as a much-needed new public school that we, as developers, will be building for the City of New York. That the New York City Landmarks Preservation Commission found there to be no impact on local historical resources, including the Brooklyn Bridge, was not mentioned by McCullough, nor was the overwhelming support of the local community board, which approved the project nearly unanimously, nor was the support of the Brooklyn borough president. These facts were supplied but not printed. In fact, the Planning Commission voted last week to approve the project. The proposal now proceeds to the New York city council for its final determination.
Jed Walentas, Principal
Two Trees Management Co.
Brooklyn, N.Y.