Friday, April 06, 2007

It's Frustrating Me!

I received an email from my dad last night alerting me to a "blurb" on the internet relating von Hippel Lindau disease to the long standing Hatfield/McCoy fued.

I read the article attached to the email.

The article describes the McCoy family as being beseiged by VHL. The writer traces the fued to an elder McCoy's quick and hostile temper. The article connects the temper that fueled the fued to the pheochromocytomas that might have plauged this man.

UGH!

I've so badly wanted press about this disease. I want people to be aware of the disease for health reasons. I want accurate descriptions of what this disease does to the body. I want to spread the word about the need for fundraising and other financing for more research. I really want the world to know the many faces of VHL and hear stories of strength, determination and hope.


I don't want it called a "rage" disease.

It's frustrating, and it's on the front page of MSN.

3 comments:

diary of a genetic defect said...

I saw that too and feel the same; I posted a note on one saying I thought it odd and that the 'rage' certainly wasn't my family’s experience of having adrenal gland tumours. But to do this on all the mentions of it would mean having to join several sites I don't want to join.

I'm cross at the 'rage' disease and the implication that it's associated with inbreeding.


I'm not sure what to do about it.

Anonymous said...

You can both write to the reporter who wrote the story. I did. Her email is MMarchione@ap.org

Anonymous said...

You can both write to the reporter who wrote the story. I did. Her email is MMarchione@ap.org.

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