We are one big family

Every week I receive several emails from people looking for answers.  Often, in the course of our interaction, we develop a relationship.  These people share information about their health situation, but they also tell me about their job, their family and their life as well as how Kennedy’s Disease is effecting them physically and emotionally.  



These last couple of weeks have brought this ‘relationship’ that we form to my attention again. 

• A wife of a person with Kennedy’s Disease shared her wedding picture and discussed how difficult it is seeing the progression of the disease in her husband and his brother.  In subsequent emails she shared more information and asked if there was anything else they could do to help minimize the progression.
• A man in England asked if the symptoms he is experiencing are similar to Kennedy’s Disease.  In the process of asking, he related a little of his family history as well as how much he missed playing tennis, basketball and other sports.  I also found out that one of his dreams (owning a farm) had to be given up as the disease progressed.
• A woman in China wrote to share her pain in seeing her husband deal with Kennedy’s Disease.  She then wanted to express her empathy for all of us living with this health condition.
• A man who cannot get his doctor to test for Kennedy’s Disease was looking for more information.  His doctor told him to look on the internet and try to identify health issues that had similar symptoms.  While sharing his symptoms, he also shared his fears.

This weekend I took a moment to go back through my email archives for this year.  I was amazed at the number of family photos that accompanied the emails.  The old adage that a “picture is worth a thousand words’ is so true.  Being able to visualize the person and his/her family makes the email much more personal.




And, it makes me realize that we are one big family spread across the globe.  We are a family needing to …

• share our stories
• learn from one another
• provide support and hope 

It is a beautiful world that we live in

Thank you for sharing and caring