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ClusterHeadSurvivor

Need every single persons help

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Please read my latest blog.

I am trying to reach Dr.Sanjay Gupta.

Any and every help is very very much appreciated.

Feel free to email my blog, send to everyone you know.

www.clusterheadsurvivor.blogspot.ca

with awareness and advocacy we can find a cure, and get help to others in need.

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I know you don't believe in Facebook, CHS, but at Gupta's FB page people can post whatever messages they want.  There's one there about CH that was just posted a few days ago.  You could post about CH, or you could post your request at your blog that he interview you on CNN. 

Some days I troll (no other word for it) sites where people mention CH to try to give them correct information on my own and refer them here and to CH.com.  That might be another way for you to spread your word.

I've also written to a couple of prominent TV and media doctors whose coverage of CH was woeful.  Never heard a word back; never got a correction of the bad/partial info they were spreading.

Gupta has covered CH on TV in the past (2010), with his usual mix of accurate and inaccurate reporting.  http://www.cnn.com/video/#/video/health/2010/01/06/gupta.cluster.headaches.cnn  Maybe he increased awareness, and maybe some people got a better diagnosis or learned about O2 (the primary subject of his coverage) as a result. 

All awareness is good, so I wish you well, of course.  But since Gupta is aware of CH, I guess we have to assume that he has his reasons for not covering it more frequently (no news, maybe -- the 2010 show was about O2 as a "new" treatment for CH -- or not that important to 99% of his viewers). 

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I know you don't believe in Facebook, CHS, but at Gupta's FB page people can post whatever messages they want.  There's one there about CH that was just posted a few days ago.  You could post about CH, or you could post your request at your blog that he interview you on CNN. 

Some days I troll (no other word for it) sites where people mention CH to try to give them correct information on my own and refer them here and to CH.com.  That might be another way for you to spread your word.

I've also written to a couple of prominent TV and media doctors whose coverage of CH was woeful.  Never heard a word back; never got a correction of the bad/partial info they were spreading.

Gupta has covered CH on TV in the past (2010), with his usual mix of accurate and inaccurate reporting.  http://www.cnn.com/video/#/video/health/2010/01/06/gupta.cluster.headaches.cnn  Maybe he increased awareness, and maybe some people got a better diagnosis or learned about O2 (the primary subject of his coverage) as a result. 

All awareness is good, so I wish you well, of course.  But since Gupta is aware of CH, I guess we have to assume that he has his reasons for not covering it more frequently (no news, maybe -- the 2010 show was about O2 as a "new" treatment for CH -- or not that important to 99% of his viewers). 

I have never seen that video, thank you imensly for posting that. I had to chuckle how Dr.Gupta said his migraines are similar....Ba hahaha. Ask anyone(like myself) who gets Tensions,Migraines,ad Clusters.

The reporters(john roberts-fellow canuck like me) seem empathetic...which was nice.

I still feel one of us. If not me, another CHr needs to be on CNN which is the most exposed news media on the planet and spread awarness.

IN adition to fellow above who has no idea what I am asking..

I am asking for as many of you to contact Dr.Gupta on my behalf. Its not for me...its for all of us

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Hey CHS,

Your efforts to increase awareness about CH are impressive and you certainly do stand out as the potential Poster Child for all of us sufferers.  I know I couldn't handle half the ordeal you have been through.  Indeed, an interview with someone that has seen almost every angle possible from this crappy condition might be the "golden ticket" to kicking the cognizance factor into high gear.

This is why so many have said that we need a famous person (or at least well recognized in the public's eye) to have this affliction and step up to the plate.  There are many examples of this happening with other diseases and conditions.  So many average Joe's in the world suffering even worse fate than CH, and no news company is interested in them.  Simply not a good enough "hook" to get the public's attention.  And that's what CNN is in business for, to get our attention.

But is CNN really the way to go?  They are primarily interested in eye-catching theater that has a flair for the dramatic.  Their position as a vehicle for news and information has not existed in many years, if it ever did.   Dr. Gupta is probably only one of the few people in the entire organization that might understand CH, and there has to be a "public interest angle" for him to get involved.  It would seem that he's simply NOT interested in the suffering of a relatively small group of people.

Your blog, videos and website are excellent in covering all that CH has to offer, but the general public (and even Big Pharma) cannot get sympathy or dollars from us. 

It's either average people doing incredible things, or incredible people doing average things, that sell an idea or product.  We just need the angle.

Best of luck in your endeavors, I'm certainly behind you  ;)

I wrote Gupta with tweet, and Facebook note, can't wait to see the reply.

weatherman

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thank you for anyone and everyones assitance. I am a member on the Tim Allen forum -RRR (yes that was my grunt) as I have met Tim Allen 2 years ago.

There is a member there, bless her heart. Made a twitter page on my behalf...and its repeatdly going to tweet Sanjay on my behalf....How about that? A non sufferer doing work?

Really warms my heart. Here is here twitter feed so far. She said she will tweet him until she gets a responce or banned.

Gotta give her credit.  She prior to me has never even heard of CH.

https://twitter.com/YooHooDrSanjay

As for CNN or the media...my surgeon said it best. There is no money in it for the media...or pharmasuticle companies.

Sadly I see his point

But as a above Weatherman you said it right.

Extrordinary story....

I think I live it....

off topic but not.....

Last night my son graduated Grade 8. IN Ontario there is no middle school. Just public school to grade 8 then highschool from 9-12.

My son has been through alot. To give you a brief synopsis...

He has been bitten twice by dogs. Mauled at age 5 and bitten in the hand 8 months ago. His cousin was murdered. They were very close and grew up together. She was 17.

He lost his grandfather who he loved deeply to his liver shutting down. Diagnosed with Elhers Danlos Syndrome, Watched me have 4 brain surgeries, loose multiple friends,jobs,relatonships.....and then his teacher got on stage and said this before giving him his award....

Quote from his teacher" For being the most trust worthy person. A person with leadship skills, giving guidence and having gone through severe adversity,hard ship,trauma in his own personal life and in his family, the kid still has come to school everday with a smile on his face"....and last but not least. The teacher finished with is "The funniest kid I know"

I take great pride in that for my son. I have had 50% custody of him since age 2, he is 14 now.Although I have had him 50%, I am a dad 100%. My son is the reason I am alive today wihout a shadow of a doubt.

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