Discovery Channel's "Mystery Diagnosis"

Discussions of issues related to living with cavernous angiomas

Discovery Channel's "Mystery Diagnosis"

Postby PattiG » Mon Sep 27, 2010 12:55 am

Hello again,

It is to my understanding Discovery Channel's Mystery Diagnosis may be running a program re: vascular malformations. Here is 'our' possible opportunity to be heard and to help bring public awareness to our disorder! :D

Discovery Channel's Mystery Diagnosis' Casting can be contacted @ 1-866-686-7466 (toll free) or @ MysteryDiagnosisCasting@gmail.com.

Well wishes,

Patti :)
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: Discovery Channel's "Mystery Diagnosis"

Postby Connie Lee » Mon Sep 27, 2010 3:21 pm

We did have a Mystery Diagnosis episode that featured Joyce Gonzales, our New Mexico Coordinator, several years ago. It became a case of "be careful what you wish for." We made 2 observations that we didn't expect about having a Mystery Diagnosis episode:

1) An episode runs for a very long time, which could have been good. First, it runs on Discovery Health. Then, it is translated and runs internationally. Finally, it goes through the same process on TLC. I'd say we had two years of regular exposure.
2) The downside is that people who contact us after it airs are generally people who have symptoms similar to those in the episode - in Joyce's case it was burning in her hands - but are not yet diagnosed with any specific illness. I believe only 2 or 3 people who had already been diagnosed with cavernous angiomas found us as a result of seeing the show over the 2 years it ran. In the meantime, we fielded emails and calls from at least 100 people that we couldn't help other than to suggest they consult with a neurologist, mention the episode, and ask whether an MRI would be appropriate. I never heard back from any of them letting me know that they received a cavernous angioma diagnosis so I can probably assume that no one did. We added to our outgoing phone message something like "Angioma Alliance is an organization for people who have already been diagnosed with cavernous angiomas. We are not medical professionals and cannot help you to obtain a diagnosis" as a result of the show.

What would be even better is to get a segment on a show where cavernous angiomas are featured without a mystery component. Savannah Hollis on our Board of Directors was featured on "The Doctors" and that seemed like a better choice. I'm not familiar enough with health shows to know what other programs might be appropriate. Maybe there is someone else who would know?

Connie
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On this journey since 2000, when my infant daughter was diagnosed.
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Re: Discovery Channel's "Mystery Diagnosis"

Postby PattiG » Mon Sep 27, 2010 5:47 pm

Unfortunately where I live, the medical community remains unaware of how to properly treat cavernous malformations and my need for surgery was overlooked 3 times and I had to refer myself outside of my geographical area. So perhaps whomever is able to bring awareness to our disorder via medical shows, talk shows, etc. can also emphasize the necessity of finding a neurosurgeon highly experienced and skilled in treating vascular malformations.
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: Discovery Channel's "Mystery Diagnosis"

Postby ShortRound » Tue Sep 28, 2010 8:43 pm

I used to watch that show quite frequently. I had no idea that they had one on Cavernous Malformations and when I was watching the episode, the entire time I thought that it was rediculous that the doctors didn't realize that it must be something neurologically wrong. Then when I saw she was diagnosed with what I had, I couldn't even believe it. Unreal.
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Re: Discovery Channel's "Mystery Diagnosis"

Postby PattiG » Wed Sep 29, 2010 6:23 pm

Since this topic didn't get a positive or supportive feedback, here's the contact info for Dr. Oz @ http://www.doctoroz.com/plugger?tid=637.
The 'worst' anyone of the media can do is not respond, or say 'no.' The more CM patients who will speak up, the more possibilities there will be to be heard, and 'we' desperately need that.

Best wishes to all,

Patti :)
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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Re: Discovery Channel's "Mystery Diagnosis"

Postby Kelley » Fri Oct 08, 2010 11:06 am

We'd contacted Dr. Oz, too. This summer. Awesome.
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Re: Discovery Channel's "Mystery Diagnosis"

Postby PattiG » Fri Oct 08, 2010 4:35 pm

Way to go, Kelley! Yay!!

:)Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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