Why did I name this blog “Living with Kennedy’s Disease?”

Recently I was asked why I chose "Living with Kennedy's Disease" as the title for my blog. After responding to the inquiry, I thought others might want to know also.

I feel the process of 'accepting' (living with and not fighting) Kennedy's Disease is not just something that happens. It is a learning process. Acceptance does not bring happiness or comfort. Instead, 'acceptance' means you are now able to acknowledge, understand, and deal with the reality of the situation. Life can once again begin to move forward.

The person with the defective gene is not the only one that has to learn to accept this health condition. The rest of the family is also intimately involved in this same learning process. Everyone in the family at some points needs to be able to say, "It's okay, I can live with this." Children will quickly sense your stress, fears and discomfort. They need to be able to discuss this health issue openly with you and understand how it might affect their lives. Often, especially when children are involved, a genetic counselor is helpful in explaining the symptoms and answering questions.

I believe that knowledge is power. Armed with the facts, it becomes easier to deflect initial concerns as well as logically assess current and future issues. Sharing that knowledge with the entire family (keeping topics relevant to the age of the children) is important especially as the disease progresses. By openly sharing this information, it helps release some of the fears and questions that the rest of the family might be harboring, but is afraid to voice.

Each person has to go through his or her own specific acceptance process (see The Nine Stages article). And, I do not believe that any two people go through the same exact process. Often, the most difficult part of this process is finding the information necessary (including finding a support group) to deal with all the questions that plaque each family member. Fear of the unknown is the most difficult situation to deal with.

The purpose of many of the posts in this blog is to provide you with information related to Kennedy's Disease to help you better understand and live with the disease. Other posts are my perceptions and life experiences that I hope you will find interesting, educational, and perhaps entertaining at times.

The above explanation is a roundabout way of telling you 'why'. If I shortened this post to one sentence, it would be, "I believe that part of my process of learning to live with (accept) Kennedy's Disease is to help others going down the same path."