On the news
 

Saw this on the local news. Nice to see some awareness out there.

http://www.fox5vegas.com/story/21222...muscle-disease

That is just a GREAT reportage that takes MG consequences seriously! Thanks for continuing the sharing!

Thanks for the article. I have to say that I found their "facts" on MG to be inaccurate and misrepresented the disease. "Spread to the lungs?" Really? :rolleyes: It can do that even if you're on a treatment. And it's not the lungs but the chest wall muscles.

Yeah, exposure about MG is great but it would be greater if they were accurate about it. Where is our MGFA?

Annie

I was thinking the same thing regarding the facts surrounding the disease. I'm still trying to decide whether I think misrepresented awareness is better or worse than no awareness, though. :)

:)

Well, in PR, any exposure is good for business. What I've found, though, is that it's only short term success that bad PR brings while good PR brings long term success, especially when there is an actual "campaign" to bring that about. I don't know if the MGFA will ever be anything more than a "grassroots" organization.

I feel sorry for this firefighter who has had to come to terms with such a huge change in his life. When your job is so physical, that can really depress the heck out of a man. No, that's not sexist. ;) It's just that when my physical self went south, I still had writing and design I could sort of do. I hope he has something that he can do beyond this job.

I think that's the part of having a disease that's so hard - finding a new purpose to keep you feeling like you are of value in the world.

Annie

Not saying you're a sexist of course :p but still can't help but say this; not only out of a man. I was a 20 year old woman, but I was very fysically active. I worked with dogs, and was sporting on a very high level.
This was very hard, and to be honest, I still haven't found a way to compare for this.

About the article....
It's never really totally accurate. I've once come across an article in a girls magazine where I lived (europe) and there was a girl who had it, and got a 3 pages long interview. It was discribed as "annoying but easy to manage, all you have to do is take 1 pill every 4 hours". Also "the only muscles affected are the ones that make you smile and the ones that make you run".

I'd rather have the American approach, which is much more dramatic, (it's rare! It's a diseaaaaase! It's real!).
Thanks for posting this!