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The message is slowly getting out
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Picture of Bruce
Registered: 09-28-2005
Posts: 654
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For so many years, the topic of Kennedy's Disease never made the news. Over the last several years, I am seeing a change taking place. Most of the recent activity is based around personal - human interest stories.

The most recent one made me consider adding a topic to our forum. This can be a place where we can publish links to stories we have found on Kennedy's Disease.

If you come across an article that relates to Kennedy's Disease or living with KD that you feel others might find of interest, put the link and a brief summary. The stories can be inspirational, educational or just noteworthy. Thanks ...

quote:
While his team was in Forest City, working out for the upcoming season with assistant coaches, Meyn learned that he did not have ALS but rather something called Kennedy’s Disease. Kennedy’s is a rare neuromuscular disorder characterized by slowly progressive muscle weakness and wasting.

The disease is something Meyn, 31, and his family are familiar with. His uncle Craig, his mother’s brother, was diagnosed many years ago when the disease was first recognized and studied. Because little was known about it. Meyn said, his uncle had to go through numerous tests to eliminate different diseases before doctors concluded he suffered from Kennedy’s.

“But I was told that I couldn’t get it, because it skips a generation,” Dusty said last week. “We didn’t have accurate information.”

Full article: A Challange Off the Court
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Here is an ongoing story about a well-known actor in the Orient who has learned to live with Kennedy's Disease.
quote:
Chew said it was the love from his family and close friends that helped him through his darkest periods.

He said: "Sometimes my wife and I may have some squabbles here and there, but she is always there for me. I won't forget how I broke down and cried when I found out I was ill, and my wife told me that we would walk down this difficult path together. ...

Full Article: Actor Chew Chor Relates Battle with MND
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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I came across this story today. It again reflects the personal hardships of those living with Kennedy's Disease.

quote:
My husband’s body is slowly failing him. He has a rare progressive form of Motor Neurone Disease called Kennedy’s disease and has gone from being physically active to depending on crutches and a wheelchair to get around. At night he breathes with the help of a machine that supports his weakened chest muscles.

Few people have heard of Mark’s disease, let alone understand what it is like to live with it.


Full Article: My Husband is Disabled
Location: rochdale. england.
Registered: 03-28-2011
Posts: 41
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Thankfully the word is slowly spreading. We have made some successful moves in the uk over this last three years or so. I know we will get there in the end.
Graham.
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