What’s In A Word?

Today, I am pondering what the difference in a word might have in generating more interest in our condition by the mainstream public.

As I explained before, Kennedy's Disease is named after Dr. William Kennedy who was the first person to identify the defect and resulting symptoms. He was a pioneer in this research. The official name of the condition is Spinal Bulbar Muscular Atrophy (SBMA). In my first post, "Okay, I Admit It," I mentioned:

"Several people have asked why Kennedy's Disease is called a "disease" when it is actually a defect in our DNA. When I looked up the word "disease" in the dictionary, it provided a clearer understanding. A disease is "an impairment of health or a condition of abnormal functioning." Well, that explanation does fit pretty well. Kennedy's Disease is a condition of abnormal functioning of the androgen receptors that fire the motor neurons. I still like the scientific name of Spinal Bulbar Muscular Atrophy. Now that is descriptive and it does not sound like something contagious. Does my being bothered by the word "disease" just show an increased level of frustration? Why should it matter what it is called?"

Well, in a recent Kennedy's Disease Association board of directors meeting, we discussed this issue again. Does the word "disease" have a negative connotation to many people? Would it be better to have our KDA logo and SBMA underneath it rather than "Kennedy's Disease Association" on shirts, cups, and other KDA items? If someone saw SBMA, would he or she be more willing to ask what it was than if it said Kennedy's Disease?

I personally do not have anything against using the word "disease." It is just a word. As I mentioned in my earlier post, however, I lean more towards using Spinal Bulbar Muscular Atrophy when I am asked about my condition because I believe the term better describes it. I also believe that because Kennedy's Disease is a rare disorder (est. 1 in 40,000 have it), people are just unfamiliar with the condition. Most people, unless they know you well, will not ask what Kennedy's Disease (or SBMA) is out of courtesy.

I would be interested in your thoughts on the subject. Do you believe that using "disease" causes any more negativity (or concern) than using SBMA?

In closing, I am adding a recent comment from Dr. Kennedy, who is now retired, but still very interested in SBMA and the activities of the KDA. "I am amazed at the wonderful support that the KDA gives to the men and families affected by KD. The progress made by current research on animal models of KD and by therapeutic trials gives reason to hope that the disease that I described 40 years ago will finally be conquered." -- William R. Kennedy, M.D.