The information out there is often still bad

On Wednesday I received a Kennedy’s Disease alert from Google. The article by Charlene Chua was a follow up on Chew Chor Meng, the actor who was diagnosed a few years ago with Kennedy’s Disease.

I was very interested in reading more about this man because when it was first announced that he had Kennedy’s Disease, I contacted the writer and then Chew’s agent to let him know the Kennedy’s Disease Association was available for support. I provided a link to the KDA website and the forum as well as mentioned about our twice a month chats. I never heard back and after a couple of more attempts I let it go.
 

Bad Information

While reading this article I was surprised at some of the information provided. For example:

• He was told he only would live eighteen months. [Wrong!] Most people with Kennedy’s Disease live a normal life span.
• Chew was also told ... ‘In worst-case scenarios, the muscles and even the brain will shrink till the person becomes incapacitated.’ [Partially wrong!] Kennedy’s Disease is a lower motor neuron disease. Cognitive (brain activity) is not impacted.
• TNP understands that there are many forms of muscular atrophy and unless the full specifics of an individual's condition are known, how the disease's passed on genetically cannot be confirmed. [Wrong!] A genetics counselor and most doctors familiar with Kennedy’s Disease can explain how it is passed along with who has the potential of being passed the bad gene.

 

A Good Message

Yet, the article had a good message. Chew commented: "Ever since I was diagnosed, I appreciate every single day. As long as I can wake up, breathe and eat, I'm happy. Being happy keeps me alive. People are never satisfied with what they have. In these three years, I've learnt a lot and one of the most important things is that all humans really need is love and peace."

Chew’s ending comments were: "You only have one life to live and you don't get a second chance, so treasure it and live properly. After three years, I can walk, I can even drive, so I'm happy. All things work out good. It's all good."
 

Be your own Advocate

I believe it is very important to not just rely upon your first diagnosis. A second opinion is often necessary and prudent. With Kennedy’s Disease there is a DNA blood test that will confirm if you have it.  Also, the internet is an excellent resource for information. Unfortunately, not everything you read is factual.

And, just as important is Chew’s message about finding happiness and accepting your situation.  Remember, the only handicap in life is a bad attitude.