Teri
Active member
Just wanted to give everyone a heads up that (in the U.S., maybe elsewhere as well) tonight's episode of 'House' is about Chiari Malformation. Our local newspaper did an
article about it because a local resident with the disease was interviewed by the writers for this episode. I've pasted the article below for anyone who might be interested in reading it.
-Teri
Washington State
BELLINGHAM WOMAN SHARES HER RARE BRAIN DISORDER FOR 'HOUSE' TV SHOW
by KIE RELYEA
For four days in late February, best friends Laura Slyman and Kaitlin
Sellereit made a mini-vacation out of their trip to the Los Angeles
area. They rode the Ferris wheel at the Santa Monica Pier, they shopped
at 3rd Street Promenade, talked about finding the perfect cupcakes,
and spent a few hours on the set of the TV series "House M.D."
But this visit wasn't just about good times and star-gazing. It was
Slyman's suffering that had brought them to California and that
Hollywood set - and her wish to speak for others like her.
The 21-year-old Bellingham resident has a rare disorder known as Chiari
malformation, a painful and at times debilitating condition in which
part of her brain pressed down onto her spinal column.
Some part of her struggle will be used in an upcoming episode of
"House," which features a team of doctors racing against time to find
answers to mystifying medical conditions.
Called "The Choice," the episode airs at 8 p.m. Monday, May 3, on Fox.
Slyman, who is a fan of the show, said she and her family used to joke
that they needed the investigative skills of Dr. Gregory House, played
by Hugh Laurie, so difficult was her condition to diagnose.
Even if the TV show doesn't ring true to her case, Slyman said she
hopes viewers will at least get a sense of what is Chiari, pronounced
kee-AR-ee.
"I want to make the public, and even some unknowing doctors, aware of
Chiari malformation so that more research can happen, people can get
properly diagnosed, and so that those not living with (the condition)
can understand what those who do go through on a daily basis," she said.
Look at her and you wouldn't know something is wrong. Slyman calls that
a blessing and a curse.
But walk behind her and you'll see the scar like a zipper running from
the middle of her skull to the middle of her shoulder blades - a
reminder of the more than 12 neurological and heart operations she's
had since age 15.
Named after Austrian pathologist Hans Chiari, the condition is a
structural defect in which the lower part of the brain, known as the
tonsils of the cerebellum, descends partly into the spinal canal and
interrupts the flow of the cerebrospinal fluid.
The cerebellum is the part of the brain that controls balance. The
fluid protects the brain and spinal cord.
In Slyman, it triggered massive pain in her head and body, numbness,
nausea and other symptoms.
"It felt like someone was squeezing my brain with their hand," she said
of the headaches.
Among Slyman's first symptoms were heart problems resulting from nerve
damage. She had a pacemaker implanted during her freshman year at
Bellingham High School.
She also had problems with her vision and her balance, she couldn't
think right, she passed out, and she had a stroke. Slyman went to
doctors throughout Washington state, and no one could figure out what
was wrong.
When she was nearly 17 - after 11/2 years of searching - experts in
New York diagnosed her with Chiari malformation. Sitting in the
doctor's office with her mom, she cried, partly out of relief of
finally knowing what was wrong.
Her experience isn't unusual.
With such a wide range of symptoms, many people who have it are
mistakenly diagnosed with anything from multiple sclerosis to
fibromyalgia. Slyman has been told her problems are in her head or she
was faking.
Over the years, she's undergone surgery to lift her brain and skull
off her spinal cord to relieve the pressure; twice to loosen her spinal
cord, which had become stuck inside her spinal canal when it should
float freely; and to fix inexplicable fractures in her spine.
Her most recent neurosurgery occurred in March 2009 to fix a fracture
that caused Slyman's head and neck to bend forward. She couldn't hold
up her head.
The pain, and recovering from surgeries to alleviate it, kept Slyman
home and in bed for much of high school. And the disorder has, for now,
thwarted her attempts to study pre-med at the University of Washington,
where she was able to take classes for two quarters two years ago.
She's been going to Whatcom Community College part time since returning
home. In recent weeks, debilitating pain has resumed in her low back,
leg, head and neck, and she's spent a lot of time in bed.
"The pains and the nausea really become a vicious cycle that are hard
to break," said Slyman, who started a nonprofit called Hope for Chiari.
"I do my best each day. But some days, it does get the physical best of
me, but I rely on God, my family and friends, and listening to music
to get me through," she added.
She shared those struggles with David Hoselton, the writer and producer
for this episode of "House." Bill Gainor, a family friend and neighbor
who also knew Hoselton, put the two in touch.
"You can't write this stuff some of the things she's gone through, and
I'm sure I don't know a third of it," Gainor said. "Laura is such a
sweet kid, her attitude has been really bright and positive and
forward-looking."
When Hoselton contacted her, Slyman said he asked her about her
symptoms, about being misdiagnosed, about how she thought the patient
should be portrayed. Then he invited her to L.A.
She can't reveal what she saw on Feb. 25 when she and Sellereit watched
part of the episode being filmed, but she did talk about something
featured in the episode's preview.
"I'm happy to see an important factor played out in the promo, of Dr.
House accusing the patient of faking an illness," Slyman said. "That
was a huge concept I wanted to make sure the writer understood."
As for that day on the "House" set, she said it was unforgettable.
Hoselton showed them around the set, they were able to see scenes being
filmed and meet two "House" doctors - Dr. Remy Hadley ("Thirteen"),
played by Olivia Wilde, and Dr. Chris Taub, played by Peter Jacobson.
"Olivia is super sweet and Peter was always cracking jokes," Slyman
said. "The episode looks like a great one."
Both Slyman and Sellereit, friends since sixth grade at Kulshan Middle
School, said they were thrilled by the trip.
"It was exciting, knowing that in the past how many opportunities that
she couldn't take advantage of, and this came along," Sellereit said.
"I was happy that opportunity came along for her, and I was equally
happy I got to go along with her."
On the trip they shared, Slyman felt blessed to have a rare good, few
days, in terms of pain and symptoms.
And on those days, they were just two young women in college, on an
adventure in L.A., talking about shopping, and conquering their fear
of Ferris wheels by riding on one, bubbling over the "I can't believe
this is happening" moments.
"We were able to just have fun and let loose," Slyman said, "and we
were able to focus on the now and live in the moment."
WATCH THE SHOW
The Monday, May 3, episode of "House M.D." will use the experiences of
Bellingham resident Laura Slyman, who has Chiari malformation, as part
of its storyline. Called "The Choice," the episode airs at 8 p.m. on
Fox.
Details: fox.com/house.
ABOUT CHIARI
Information on Chiari malformation is online at:
• ninds.nih.gov for the National Institute of Neurological Disorders
and Strokes. Type "Chiari malformation" into the search window on the
home page.
• chiaricenter.org for the Chiari Center Foundation.
article about it because a local resident with the disease was interviewed by the writers for this episode. I've pasted the article below for anyone who might be interested in reading it.
-Teri
Washington State
BELLINGHAM WOMAN SHARES HER RARE BRAIN DISORDER FOR 'HOUSE' TV SHOW
by KIE RELYEA
For four days in late February, best friends Laura Slyman and Kaitlin
Sellereit made a mini-vacation out of their trip to the Los Angeles
area. They rode the Ferris wheel at the Santa Monica Pier, they shopped
at 3rd Street Promenade, talked about finding the perfect cupcakes,
and spent a few hours on the set of the TV series "House M.D."
But this visit wasn't just about good times and star-gazing. It was
Slyman's suffering that had brought them to California and that
Hollywood set - and her wish to speak for others like her.
The 21-year-old Bellingham resident has a rare disorder known as Chiari
malformation, a painful and at times debilitating condition in which
part of her brain pressed down onto her spinal column.
Some part of her struggle will be used in an upcoming episode of
"House," which features a team of doctors racing against time to find
answers to mystifying medical conditions.
Called "The Choice," the episode airs at 8 p.m. Monday, May 3, on Fox.
Slyman, who is a fan of the show, said she and her family used to joke
that they needed the investigative skills of Dr. Gregory House, played
by Hugh Laurie, so difficult was her condition to diagnose.
Even if the TV show doesn't ring true to her case, Slyman said she
hopes viewers will at least get a sense of what is Chiari, pronounced
kee-AR-ee.
"I want to make the public, and even some unknowing doctors, aware of
Chiari malformation so that more research can happen, people can get
properly diagnosed, and so that those not living with (the condition)
can understand what those who do go through on a daily basis," she said.
Look at her and you wouldn't know something is wrong. Slyman calls that
a blessing and a curse.
But walk behind her and you'll see the scar like a zipper running from
the middle of her skull to the middle of her shoulder blades - a
reminder of the more than 12 neurological and heart operations she's
had since age 15.
Named after Austrian pathologist Hans Chiari, the condition is a
structural defect in which the lower part of the brain, known as the
tonsils of the cerebellum, descends partly into the spinal canal and
interrupts the flow of the cerebrospinal fluid.
The cerebellum is the part of the brain that controls balance. The
fluid protects the brain and spinal cord.
In Slyman, it triggered massive pain in her head and body, numbness,
nausea and other symptoms.
"It felt like someone was squeezing my brain with their hand," she said
of the headaches.
Among Slyman's first symptoms were heart problems resulting from nerve
damage. She had a pacemaker implanted during her freshman year at
Bellingham High School.
She also had problems with her vision and her balance, she couldn't
think right, she passed out, and she had a stroke. Slyman went to
doctors throughout Washington state, and no one could figure out what
was wrong.
When she was nearly 17 - after 11/2 years of searching - experts in
New York diagnosed her with Chiari malformation. Sitting in the
doctor's office with her mom, she cried, partly out of relief of
finally knowing what was wrong.
Her experience isn't unusual.
With such a wide range of symptoms, many people who have it are
mistakenly diagnosed with anything from multiple sclerosis to
fibromyalgia. Slyman has been told her problems are in her head or she
was faking.
Over the years, she's undergone surgery to lift her brain and skull
off her spinal cord to relieve the pressure; twice to loosen her spinal
cord, which had become stuck inside her spinal canal when it should
float freely; and to fix inexplicable fractures in her spine.
Her most recent neurosurgery occurred in March 2009 to fix a fracture
that caused Slyman's head and neck to bend forward. She couldn't hold
up her head.
The pain, and recovering from surgeries to alleviate it, kept Slyman
home and in bed for much of high school. And the disorder has, for now,
thwarted her attempts to study pre-med at the University of Washington,
where she was able to take classes for two quarters two years ago.
She's been going to Whatcom Community College part time since returning
home. In recent weeks, debilitating pain has resumed in her low back,
leg, head and neck, and she's spent a lot of time in bed.
"The pains and the nausea really become a vicious cycle that are hard
to break," said Slyman, who started a nonprofit called Hope for Chiari.
"I do my best each day. But some days, it does get the physical best of
me, but I rely on God, my family and friends, and listening to music
to get me through," she added.
She shared those struggles with David Hoselton, the writer and producer
for this episode of "House." Bill Gainor, a family friend and neighbor
who also knew Hoselton, put the two in touch.
"You can't write this stuff some of the things she's gone through, and
I'm sure I don't know a third of it," Gainor said. "Laura is such a
sweet kid, her attitude has been really bright and positive and
forward-looking."
When Hoselton contacted her, Slyman said he asked her about her
symptoms, about being misdiagnosed, about how she thought the patient
should be portrayed. Then he invited her to L.A.
She can't reveal what she saw on Feb. 25 when she and Sellereit watched
part of the episode being filmed, but she did talk about something
featured in the episode's preview.
"I'm happy to see an important factor played out in the promo, of Dr.
House accusing the patient of faking an illness," Slyman said. "That
was a huge concept I wanted to make sure the writer understood."
As for that day on the "House" set, she said it was unforgettable.
Hoselton showed them around the set, they were able to see scenes being
filmed and meet two "House" doctors - Dr. Remy Hadley ("Thirteen"),
played by Olivia Wilde, and Dr. Chris Taub, played by Peter Jacobson.
"Olivia is super sweet and Peter was always cracking jokes," Slyman
said. "The episode looks like a great one."
Both Slyman and Sellereit, friends since sixth grade at Kulshan Middle
School, said they were thrilled by the trip.
"It was exciting, knowing that in the past how many opportunities that
she couldn't take advantage of, and this came along," Sellereit said.
"I was happy that opportunity came along for her, and I was equally
happy I got to go along with her."
On the trip they shared, Slyman felt blessed to have a rare good, few
days, in terms of pain and symptoms.
And on those days, they were just two young women in college, on an
adventure in L.A., talking about shopping, and conquering their fear
of Ferris wheels by riding on one, bubbling over the "I can't believe
this is happening" moments.
"We were able to just have fun and let loose," Slyman said, "and we
were able to focus on the now and live in the moment."
WATCH THE SHOW
The Monday, May 3, episode of "House M.D." will use the experiences of
Bellingham resident Laura Slyman, who has Chiari malformation, as part
of its storyline. Called "The Choice," the episode airs at 8 p.m. on
Fox.
Details: fox.com/house.
ABOUT CHIARI
Information on Chiari malformation is online at:
• ninds.nih.gov for the National Institute of Neurological Disorders
and Strokes. Type "Chiari malformation" into the search window on the
home page.
• chiaricenter.org for the Chiari Center Foundation.
