NEWSWEEK

Epilepsy in America: What Must Be Done

By Jon Meacham | NEWSWEEK
Published Apr 11, 2009
From the magazine issue dated Apr 20, 2009
http://www.newsweek.com/id/193480

It was supposed to be an ordinary Saturday. on Feb. 16, 2008 a cool but not cold late winter's day my wife and I had plans for a late breakfast with a colleague of mine in New York when the call came. The bright, beautiful 4-year-old son of our closest friends had died in his sleep, the victim of an epileptic seizure. Henry Foster Lapham?he is the wonderful child pictured here?had been diagnosed with epilepsy shortly before the attack that killed him; in the vernacular of the world of epilepsy, Henry suffered what is called Sudden Unexplained Death in Epilepsy.

There are no words to capture the horror of what happened to Henry. At a service in his memory in the Little Chapel on the grounds of St. Albans School in the shadow of Washington National Cathedral the pain in the small sanctuary was palpable; I can feel it even now, more than a year later his parents, Gardiner and Nicholas Lapham, somehow mustered the courage to speak. Here is part of what Nicholas said: "Gardiner and I are trying hard to find hope in the face of this inexplicable and overwhelming loss. Somehow we have to believe that the indomitable spirit with which Henry led life will steadily erode the shattering despair of his death until one day, many months or years from now, it triumphs. For this to happen, we face a long battle involving a great deal more than simply marking the passage of time. Our enemy is not grief but fear?fear of pain and the unthinkable reality of losing a small child. Surrendering to that fear by pushing the grief away and deceiving ourselves with the illusion of a return to normalcy is the surest way to extinguish hope. Rather we must fight this battle with Henry firmly by our side. We must celebrate him, tell stories about him, look at his picture, smile about him, talk to him and hold him tight to our hearts, even when doing so hurts to the point of being unbearable. Where this delivers us in the end we cannot now know. With luck we will be stronger and better as individuals, as a family and as a community, but we will never be the same."

Their rising to speak was one of the bravest things I have ever seen; their words among the most moving I have ever heard. Part of the battle Nicholas spoke of only part, but a critical one is the battle to understand the causes of epilepsy and to advance the cause of research into this widely misunderstood and too-little-known disorder, one that is as common as breast cancer in America.

The Laphams are not seeking attention; they are understandably committed to making sure that Henry's life is not defined by how he died. The only reason you are reading about them now is that I asked them to allow me to tell Henry's story in the hope that, by exploring the subject on our cover, NEWSWEEK might be able to help explain epilepsy and contribute to the debate over funding and research.

Two things prompted me to ask at this time. The first was the one-year anniversary of Henry's death. The other was a recent cover of Parade magazine that featured Susan Axelrod and her daughter, Lauren, who has lived with the disease since she was 7 months old. Susan, who is married to David Axelrod, President Obama's senior adviser, is a founding board member and president of CURE, Citizens United for Research in Epilepsy; Gardiner Lapham also serves on that board, as does Randy Siegel, the publisher of Parade, whose young daughter has suffered daily seizures for 11 years. The Sunday magazine's cover was a convincing call for awareness and action, and we wanted to add our voice to the conversation.

And so this issue of NEWSWEEK came to be because of Henry, and because of the millions of others who suffer from the neurological disorder that manifests itself in seizures. It is an especially mysterious affliction, for it is rooted in the mysterious complexities of the brain. Epilepsy is from the Latin epilepsia, which means "to take hold of," and those who suffer from the brain disorder find themselves in the grip of forces forces from within their own bodies, their own beings that they cannot control. It is terrifying. And it can be deadly.

In the cover package, we place epilepsy in historical context and demonstrate how it lags behind other neurological disorders in terms of research dollars; it is our contention that more funding is needed, and Sen. Edward M. Kennedy is considering legislation that would begin to move us in the right direction. Jerry Adler and Eliza Gray profile a doctor on the front lines of the epilepsy wars, Orrin Devinsky of NYU, and Susan Axelrod contributes an essay on her family's experience?and what it has led her to believe must be done.

"The worst thing that can happen to a family happened to us," says Gardiner. "If our story can help science learn more about the workings of the brain, then we should tell it." And the rest of us should listen, and act.

Agony, Hope & Resolve

By Susan Axelrod | NEWSWEEK
Published Apr 11, 2009
From the magazine issue dated Apr 20, 2009
http://www.newsweek.com/id/193587

Epilepsy entered our lives more than 25 years ago, and unless things change, I fear that outcomes for families in the future won't be any better than they were for us.

A STORM IN THE BRAIN

By Jon Meacham | NEWSWEEK
Published Apr 11, 2009
From the magazine issue dated Apr 20, 2009
http://www.newsweek.com/id/193586

The toll of epilepsy has been overlooked?and the research underfunded?for too long. A call to action.

In the Grip of the Unknown

By Jerry Adler and Eliza Gray | NEWSWEEK
Published Apr 11, 2009
From the magazine issue dated Apr 20, 2009
http://www.newsweek.com/id/193484

It takes courage and discipline to live every day with the haunting uncertainty of epilepsy. A good doctor helps, too.

A Call to Arms in the Epilepsy Fight
Letters to the Editor
NEWSWEEK
Published Apr 25, 2009
From the magazine issue dated May 4, 2009
http://www.newsweek.com/id/195075

'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.