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BMD Registry - Very Important   by  on 2011-01-24 12:22:12
 Subject :Money Wasting...... 2009-05-17 16:01:57 
DREAMBIGGER
Experienced
Joined: 2008-10-29 05:09:16
Posts: 39
Location: 
How many people here would agree with me that the world spends a whole lot a money on things that don't affect us and things that are very unnecessary. When that money could go to curing a disease and helping a persons life. Things like: 1. Space travel 2. Archaeology 3. Pets and their accessories (scientists wasting time on...better dog food, drugs for dogs etc.) 4. Electronics ( ipod touch, blackberries etc.) 5. Armed Forces (tons of money to build weapons, tanks, fighter jets, bombs to kill people and lots of money to develop even more weapons and bombs) I think that once our own people are healthy at least and happy. Than maybe we could spend money on all of this other nonsense. People should always come first and their health. Over all this other bull crap. No one should ever have to go through life with a disease like this. Its torture, we can't live the lives we want and get weaker and weaker everyday until we die. What kind of life is that!? There are so many things that I can't do anymore, things that I was even able to do just a few years ago.
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DREAM BIGGER!!!
 Subject :.. 2009-05-17 23:51:38 
MATT2003
Ninja
Joined: 2007-03-28 00:42:19
Posts: 81
Location: Chicago,IL
I think there is truth in what your sayin and I think not enough of us contact the right people to push. If people don't speak up on this site do you think they will write a letter to a politician , Doctor or scientist? The problem is most until it becomes an epedemic like pollio that don't step in. For BMD it doesn't get brought up enough, doesn't get talked about and for the most part people look at us and say you look normal. Then for the average after 40 they have problems and issues, medical, financial and etc and there is no help. So for us we need more people to speak up write letters have more conferences find others. Look on here at the people listed and then think this is probably less then 1% that are out there. The same goes on the comments less then 1% talk on here. Its only what 5-10 plus some Moms. We need everyone and need to band together and find solutions to day to day issues and also cures or treatments or what ever comes first. I met a few people on face book and they are not even on this site. They have the same problems and issues and one question they ask me is what do we or I do for the future? Yes we will get disabled but what if your alone? What if you have a family ? What support do you get medically or financially in the country you live in? Its all about Quality of life and happiness....We need more voices. I write to people every week including the media. Even if I don't get responses. I will not lay down and die until I atleast speak and fight.
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 Subject :.. 2009-05-18 01:22:23 
ilj
Ninja
Joined: 2008-11-12 07:36:55
Posts: 65
Location: 
Yeah... I remember reading an article and a line that stood out to me was, "The economics are just not there" (to further study MD) or something to that effect. It was harsh, but I guess that is the reality of life. :/ I think that many people are not aware of a lot of illnesses (I mean, I wasn't fully aware of these diseases until somebody I knew told me he has it..) And I think a lot of people who don't talk are people who may not even have accepted the disease yet; people who want to keep it to themselves. I know that my friend who has MD and still "looks fine" doesn't want anybody else to know...
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 Subject :.. 2009-05-19 07:14:02 
kgoodfellow
All Star
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
I think if we get organized we can have a larger impact than everyone thinks. Very mild BMD can go undiagnosed, so there may be a much larger population than is commonly thought. We will be announcing a new non-profit just for BMD at the August conference in Boston. That would be a good way to put our heads together and pull/push issues that we find important. Kevin
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K. Goodfellow
 Subject :Re:Money Wasting...... 2009-08-11 06:05:00 
Janet and Cefin lewis
New
Joined: 2007-10-11 21:05:28
Posts: 4
Location: 

Too true! My husband was 38 before he was diagnosed and with hindsight he had obviously had it all his life there must be hundreds of people out there who just think, as we did that he was not very athletic and that he had dodgy knees!! Hense the frequent falls. We were luck to get a quick diagnosis from out GP who spotted it instantly. But I frequently have to explain what BMB is to people who question why my hubby now walks with a stick. The is so little knowledge of MD out there and we the sufferers and families need to SHOUT louder!!!
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