Upcoming 'House' episode featuring CM

[Guest guest]

Hi All,

I'm posting this message from , with her permission. Please email her

directly at: Jean2389@... if you have any questions.

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Hello,

You've probably heard by now about the upcoming episode of " HOUSE " which is

going to focus on Chiari. I wanted to let my different CM support groups know

about it so that we can inform all of our CM community. I was actually the

Chiariian who helped out with this episode. I'm Slyman (aka

" Sweettartgirl " on the boards), 21, and am a premed student. In January, I

received a call from one of the writer/producer's, Hoselton, the hit FOX

TV medical drama " HOUSE " . I was asked to share my Chiari story with them and

help with medical knowledge about it. They wanted someone who knew CM inside and

out and knows how the patient feels but also wanted the " rarest of the rare " ,

which is me. The story is fictional, but there are parts that came from my story

or loosely based. The main disease focus will be Chiari. That's all I can say

about the actual episode, as I'm bound by a confidentiality agreement. I figure

this is a great opportunity for awareness and so I felt so blessed to be able to

use my voice on the behalf of all Chiariians. No matter how the show turns out,

I think that just getting the idea of Chiari (and how to pronounce it) to the

public, that we will increase awareness and funds for research. said that,

usually, after a disease is featured on their show that website hits and

donations go up by about 2-3 times.

I was lucky enough to, with my best friend, fly to LA in February to go onto set

on the FOX lot. (the writer/producer) took us under his wing and, after

touring the lot, handed us headsets and surprised us by bringing us onto a

rolling set! The first people we saw were two of House's main docs - Olivia

Wilde ( " 13/Remy " ) and son ( " Dr. Taub " ) and they were extremely

friendly, down to earth and hilarious! We met the crew and sat next to and

the director and got to watch almost 2 hours of filming of a scene for " my "

episode, were shown around the " hospital " and all of that type of stuff - even

got a gift bag of HOUSE stuff, including a cast photo they'd all autographed for

us!

The episode, " The Choice " , will air in 1 1/2 weeks - Monday, May 3, 2010 on FOX.

My college is having a large screening and will be advertising it.

I have Chiari/EDS/dysautonomia/TCS et all. In the past 5 1/2 years, I've had

over a dozen (mostly very complex) neuro/cardiac surgeries, a stroke, and

numerous CSF leaks - I've had a pacemaker since I was 15 and I'm now fused from

the occiput to T2. I'd had symptoms my whole life, but it really started after a

pacer revision surgery and then took a year and a half, and flying cross

country, to get diagnosed and that was only after I found out about this thing

called Chiari on a pacer support group and told my parents we had to look into

it, since no one else believed me. A big problem was that I can't have MRI's due

to my pacer. My motto is " why not me? " After seeing those who have now become my

dearest friends, of all ages, whom are like family to me that are also suffering

so terribly and just begging for help, I knew I had to do whatever I could to

help fight this, no matter what. In 2007, I organized a Chiari Fun Run for my

senior project and we raised over $13000 that went to CM research. Two years

ago, I started my own nonprofit called Hope for Chiari. It's just a small group

as I haven't had energy to really get it going, but we've raised over $3,000 and

try to help families dealing with CM by sending care packages to Chiari

kids/teens/young adults who are going thru a rough time with CM just to bring

them a smile and support. Currently, I'm not doing too great. I'm going to

school part time and the rest is spent at doctors. My last neurosurgery was in

March 09 and by the summer I was doing great - even became a certified nursing

assistant, however in October on my way to school while at my bus stop, a big

guy who I didn't know grabbed and shook me very hard. I haven't been the same

since and am now not doing too great, but I know I can fight this and this HOUSE

episode has given me a renewed sense of hope

So, that's me in a nutshell. I know some like to know that I'm not one of those

CMers who are the rare ones who have one surgery and do great, if that makes

sense.

There are currently a few different facebook " event's " for the airing of the

show - the largest has over 2500 members, my college is doing a story in their

paper and hopefully some local news will as well. However, I want to reach ALL

CMer's, which is why I'm emailing the groups, as this isn't just about me, this

is about all of us. This is about the public finally hearing us and

understanding what we live with day to day. It's our story.

Let me know if you have more questions! Thanks for all YOU guys do in fighting

for us!

Slyman

Jean2389@...