Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
New York Times Article on 2-20-07
Wed, 02/21/2007 - 10:50I don't know if anyone saw this, but there was a GREAT article in the New York Times yesterday. It was entitled "Battling Epilepsy, and It's Stigma" and describes a young girl with Epilepsy. Unforunately, it also goes into detail about her lack of response to most meds, the VNS implant that wasn't working for her, and information on the Ketogenic diet. It also describes the reluctance of many people to discuss the disorder.
Here is the link to the article:
http://www.nytimes.com/2007/02/20/health/20epil.html?_r=1&ref=health&oref=slogin
It is quite fascinating, and at the same time very true, but sad.
Susan
Comments
Re: Re: New York Times Article on 2-20-07
Submitted by lisam11463 on Sat, 2007-07-14 - 13:48
"Changing the misconceptions society has about epilepsy,
by educating one person at a time"....Lisa-Marie Kinsman
Author of "Free at Last, My Lifetime Battle to Overcome Epilepsy".
Here is the article from The Daily Item of Lynn. Since
it was never published online, there is no way I can post the actual
article, so I have to type it out freehand. Here goes.
Former Lynn woman writes book about epilepsy battle
By Robin Kaminski
The Daily Item
Former Lynn resident and epilepsy survivor Lisa-Marie Kinsman has
penned a memoir about living with the traumatic syndrome and of brain
surgery that liberate her from her painful past.
The book, "Free at Last, My Lifetime Battle to Overcome Epilepsy",
takes place for the most part in Lynn where Kinsman lived for many
years and graduated from Lynn Vocational Technical Institute in 1982.
Now married and living in Pennsylvania, Kinsman, 44, has been an
epilepsy advocate and online counselor to over 1,600 clients since
1995 and has been an inspirational speaker on behalf of the Epilepsy
Foundation for the past three years.
Frustrated with her condition, Kinsman said she sought a solution
to her syndrome through three doctors described as "angels" at SUNY
Upstate Medical Center in Syracuse, New York that performed brain
surgery to remove her left hippocampus.
Awake four roughly 14 of the almost 16 hours of surgery that was
performed through a 10 inch incision in her skin, Kinsman said her
skull bones were cut with a tool similar in size to a carpenter's
jigsaw.
"My surgery was performed at the end of an era in medicine when it
was necessary for most patients having left temporal lobe surgery to
be fully awake, so they could be tested throughout the surgery," she
said.
When Kinsman awoke from the anesthesia portion, she said she came
out fighting.
"I had the operating room in sheer and utter chaos when I
atttempted to get off of the table with my skull wide open", she
quipped. "I demanded a cigarette, along with some nasty adjectives
and told the 12 doctors and nurses that I was going home!"
Following a yearlong recovery of "sheer hell," Kinsman said she now
has more energy and feels free from having to take roughly 18 pills a
day in the past.
"I was so nervous about the surgery, that I had horrific self-
inflicted headaches from worrying so much", she said. "I had lived
with epilepsy ever since I was 2 years old and kids had always teased
me about it. Parents didn't want their kids hanging out with me".
According to Kinsman there are 3 million Americans who are
afflicted with epilepsy, roughly 50 million worldwide and another
200,000 who will be diagnosed with epilepsy this year.
"I say roughly because there are so many third world countries that
still hide epilepsy from society because it is still believed to be a
shameful disease with a terrible stigma", she said. "It is among the
least understood of chronical medical conditions, even though one in
three adults knows someone with epilepsy.
Kinsman went on to say that people who are blind, deaf, wheelchair
bound or have Down's syndrome, have been accepted into society, while
those with epilepsy are "still living in the closet".
"Everyday is like a gift and there are so many people who rush
through their days and don't stop to smell the roses", she
said. "But my time is very precious to be because I had to fight for
my freedom for the past 30 years".
The recently published book can be found at Barnes and Noble,
Amazon and Publish America.
Re: Re: Re: New York Times Article on 2-20-07
Submitted by short circut on Sat, 2007-07-14 - 15:48
One reader's comments on this book:
As an epilepsy patient I was hoping to find some insight and possibly inspiration from this book. I got neither of these two things. It is a worthless and shameless piece of self-admiration. I won't allow this to take one more minute of my time so I will just say you would become more enlightened to read the back of a cereal box.
Re: New York Times Article on 2-20-07
Submitted by aquila316 on Fri, 2007-03-16 - 11:26
Now that this is on the Epilepsy.com homepage I feel totally useless. Just remember where ya heard about it first...(Joking) :)