Hello, important info below! I can not believe that this SUDEP info is
withheld from some Epi people. If we were at high potential heart attack
risk we'd be given instruction on what to do and how to protect and prepare
by a cardiologist. In my opinion this critical info should be shared with
everyone.
Our daughter hugs her pillow as she sleeps, we quite often have to pull it
away from her face as she has clinched her face strongly into it. Sometimes
she is gasping and gelping which we'd hear but many times she is silently
seizing due to having her head buried in a pillow. At age 8 she still sleeps
in our room, we are too afraid to have her sleep in another room for this
reason.
Surprisingly enough, her new doctors (thank God, after reading this) have
just scheduled her for an echo cardiogram and a 24 hour heart monitoring
test by wearing something all day at home.
Pat D
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From: Susan Axelrod [mailto:info@cureepilepsy.org]
Sent: Tuesday, July 27, 2010 8:11 AM
To: aina-pat@cox.net
Subject: CURE Families and Scientists Featured in Today's New York Times
If you are unable to view the message below, click here
<http://cure.convio.net/site/R?i=0_bJEEVjZf9YNjtSRcrjAw..> to view this
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<http://cure.convio.net/site/R?i=toMQZnX9NI-J9TxFwjHjGA..> CURE Epilepsy
Today brought long-overdue and much-needed public attention to one of the
worst consequences of epilepsy-Sudden Unexplained Death in Epilepsy. CURE
family stories were courageously represented by Steve Wulchin and Gardiner
<http://cure.convio.net/site/R?i=zhwcaHiwb1YBjy0Y9Yb01A..> Lapham, and
scientific perspectives were offered by Elizabeth
<http://cure.convio.net/site/R?i=yaD89VFqwcafbBPhDAL2vQ..> Donner, MD, CURE
2009 Grantee and Scientific Advisory Board member, Jeff Noebels, MD, PhD.
Please read the story below, forward it to family, friends, neighbors, and
coworkers, and help us raise awareness of SUDEP. In addition, if you would
like to encourage more awareness for this issue, please email
managing-editor@nytimes.com.
Best regards,
Susan
--
Susan Axelrod
Chair, Board of Directors
<http://cure.convio.net/site/R?i=CUEP1ULQzLJLI354r4QV8w..>
www.CUREepilepsy.org
Unmasking Silent Killer in Epilepsy
New York Times
By ALIYAH BARUCHIN
Published: July 26, 2010
On July 9, 2009, Steve Wulchin went to wake his 19-year-old son, Eric, in
their home in Boulder, Colo. Eric had been given a diagnosis of epilepsy
<http://cure.convio.net/site/R?i=Q0U2H7sFxrK7rgIGebTqdg..> three years
earlier, but other than that, his father said, "there was nothing out of the
ordinary." His seizures
<http://cure.convio.net/site/R?i=ntcGsebAtVdw8SmDONyPSw..> had been well
controlled; he had not had one in six months.
NY Times
<http://cure.convio.net/site/../images/content/pagebuilder/11181.png>
VICTIM Eric Wulchin in Hawaii in 2008. He was 19 years old when he died last
July in his bedroom.
Yet that morning, Mr. Wulchin found Eric lying on the floor. CPR and
paramedics were too late; Eric had died at about 2:30 a.m.
The cause of Eric's death was ultimately listed as Sudep, for sudden
unexplained death in epilepsy. The syndrome accounts for up to 18 percent of
all deaths in people with epilepsy, by most estimates; those with poorly
controlled seizures have an almost 1 in 10 chance of dying over the course
of a decade.
Yet many patients and their families never hear about Sudep until someone
dies. Mr. Wulchin said none of Eric's four neurologists ever mentioned it to
the family.
"The message we got back was, 'There's no reason why he can't live a long
and normal life,' " he said. "It never occurred to me that this was a
possibility."
Now, physicians, researchers, advocates and relatives like Mr. Wulchin, a
technology executive, are trying to raise awareness about Sudep. One of
their goals is to establish registries of deaths and autopsy results,
building databases to support future research.
Sudep most often affects young adults, typically ages 20 to 40, with a
history of the convulsive seizures once known as "grand
<http://cure.convio.net/site/R?i=g-zLY6y08lMMTi_4ssJvZA..> mal." Others at
risk include those with difficult-to-control seizures, or seizures at night;
people who take a large number of anti-epileptic medications or take them
irregularly; African-Americans with epilepsy; and people with epilepsy whose
I.Q. is under 70.
Many victims die in their sleep, and their bodies are often found face down.
That prone position suggests that they may have had a neural, respiratory or
cardiac crisis - or some combination - that left them momentarily unable,
like SIDS <http://cure.convio.net/site/R?i=wyW_3Cwt943zmwTywrCYtQ..>
babies, to rescue themselves from suffocating.
"After a seizure, the person is in a dramatically reduced state of
awareness, and even their reflexes are reduced," said Dr. Orrin Devinsky,
director of the Comprehensive Epilepsy Center at New
<http://cure.convio.net/site/R?i=IqcejNekZQQss6V1Bu15Sw..> York University.
For most people, he went on, "once your airway's obstructed, you roll over.
For people with epilepsy, they don't."
Epilepsy, wrapped for centuries in secrecy and stigma, has gained wide
attention in recent years. Not so with Sudep; even neurologists who
specialize in epilepsy sometimes feel that mentioning it to patients who
aren't at high risk may impose too much of a burden.
"Whenever I speak to a group of colleagues about telling all their patients,
it's controversial," said Dr. Elizabeth Donner, a neurologist at the
Hospital for Sick Children in Toronto and co-founder of the advocacy group
Sudep <http://cure.convio.net/site/R?i=yjU1i9T1Wo156Pk76v85Nw..> Aware.
"People worry about having a negative impact on the quality of life of
people with epilepsy if we tell them about this."
Mr. Wulchin and other advocates say this attitude needs to change, even in
the absence of a concrete way to predict or prevent a sudden death.
"People go off and have babies knowing very well that SIDS could strike," he
said. "People have surgery and they get the standard warning that there
could be adverse reactions to the anesthesia
<http://cure.convio.net/site/R?i=sQt_L3-t0MdkV9YbodTIBA..> to the point of
a fatality. We deal with these kinds of ambiguities all the time."
Dr. Donner agrees. "People with epilepsy have the right to know that Sudep
exists, and they have the right to be responsibly counseled about how to
reduce the risk," she said. "And actually, that doesn't have to be a painful
conversation."
Dr. Devinsky, at N.Y.U., says he often directs at-risk patients to Britain,
which has been at the forefront of Sudep awareness. There, devices like
mattress alarms and structured pillows are sold to protect against death in
sleep.
But just as research into epilepsy has been hindered by stigma, experts and
advocates say the silence about Sudep is making it difficult to explore
causes and treatments.
"I think this needs to be part of our conversation," said Gardiner Lapham of
Washington, D.C., a board member of the advocacy group Citizens United for
Research in Epilepsy, whose son, Henry, died in 2008, at age 4. "The more
people talk about it, the more people are going to be interested in getting
to the causes of why this is occurring, and ultimately identifying ways to
prevent it."
Last year, researchers at Baylor Medical College in Houston, led by Dr.
Jeffrey Noebels,discovered
<http://cure.convio.net/site/R?i=2lRJ8dRJYPzkJLpsjojtkg..> that a genetic
mutation linked to a type of irregular heart rhythm called Long QT syndrome
could also lead to seizures - suggesting that Sudep may result from
electrical disruptions occurring in the brain and heart together. And this
spring, the <http://cure.convio.net/site/R?i=OtxF4d6O3TVemEobDVrm0Q..> team
isolated a mutation on a different gene that may cause seizure activity in
the brain to direct extra impulses through the vagus nerve to the heart,
making it slow and, in some cases, stop beating.
"We are hopeful the findings spur epileptologists to urge patients with
epilepsy to obtain an electrocardiogram as part of their full evaluation,"
Dr. Noebels said. "If it is abnormal, we expect more genetic information
will be obtained, and that we can steadily build a database that tells us
how important the incidence of mutations in these two genes really is."
Steve Wulchin says he has had heart arrhythmias
<http://cure.convio.net/site/R?i=3SvUcw07_363EU2nqFbjgQ..> , and he wonders
if that could have been connected to Eric's condition.
"Had I known a year ago what I know now, I would've said, 'We're going to
the cardiologist, we're going to get you an EKG, an echocardiogram,
potentially genetic testing; we're going to get to the bottom of this,'" he
said.
But neurologists say the Baylor findings are far from definitive. "I'm
highly respectful of his work," Dr. Donner said of Dr. Noebels. "I don't
want to downplay it at all. But you're not going to suddenly go back and
find samples of all these people, and all of them will have problems with
this channel in the heart and the brain.
"I know sometimes it's played up as 'Gene for Sudep Discovered,' " she went
on. "But Sudep is going to be multifactorial - no question."
The lack of awareness about Sudep extends to forensic
<http://cure.convio.net/site/R?i=wXdlaVrzaOskcS5ds5x7-g..> science. "I
actually instructed the coroner how to classify Eric's death, which is kind
of mind-boggling when you think about it," Mr. Wulchin said. "When I
explained it, he said, 'Well, that's interesting; we've had five or six
similar cases in Boulder County in the last year.' So it leads me to believe
that it's vastly underreported."
Dr. Donner, who is building the first registry of pediatric Sudep deaths in
Canada, agrees. "I think that underreporting of Sudep cases, or
underrecognition, is very, very high," she said, adding, "I want open
communications so that we can learn more."
And Mr. Wulchin says families like his need to be more aggressive in raising
overall awareness of the syndrome.
"You have to be your own best advocate, and I think the patients and the
parents and the advocacy groups really have to start forcing the issue," he
said. "There's no magic answer but awareness. Nothing's going to happen
without that."
--
Read the article on the NY Times website:
http://www.nytimes.com/2010/07/27/health/27epil.html?_r=1
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