I love to receive comments and emails from people. It means a lot to me to have readers of my blog to take the time to comment about something I wrote. This week I received an email from a young woman whose father recently was diagnosed with Kennedy’s Disease. Her message is one that needs sharing.
Spinal Bulbar Muscular Atrophy, aka Kennedy’s Disease, like so many rare neuromuscular disorders, can be devastating to a family. It takes a certain type of strength for family members, especially children, to move forward after the diagnosis. This person is not only moving forward, she is looking for ways to help spread the word and help others.
I would like to start this letter off by saying thank you for sharing your personal journey and wisdom through your writings. The KDA website and your blog have given me and my family comfort and strength.
I am 26 years old and live in Massachusetts. A few months ago, my dad was officially diagnosed with Kennedy’s Disease.
When my dad first explained to me that he had a neurodegenerative disease, it was the first time in my life I saw him as vulnerable. At first, it seemed impossible to imagine that the man who has cared for and protected me my whole life will slowly begin to depend on others. I started to think about all the little things that made him my dad.
He is the man who tucked me in at night that checked for monsters under my bed. He is the one who gave me piggyback rides around the house, and played with me outside. He held my hand and watched me grow. I asked myself, “Will he be able to walk me down the aisle and dance with me at my wedding?” I know similar thoughts have gone through his mind as well, which is what hurts my heart the most. Yet, those are not the things that truly define him as a father. It is his quiet way of always understanding, and unyielding patience towards me. It is his reassuring presence, his unconditional love, and meaningful life lessons that make him my dad. These are the invaluable parts of my father that Kennedy’s Disease can never weaken or take away.
I’ve learned to never take another walk or hug from my dad for granted. As you have said before, living with KD is a never-ending learning process - and he has harder days ahead. It is undeniable that Kennedy’s Disease has made my father physically weaker, yet he is the strongest man I know.
Like many families who are recently diagnosed, I too, had never heard of Kennedy’s Disease. After searching long and hard for stories and information, I was disheartened by how little information I found. I then came across a post of yours that caught my attention:
Although KDA has made significant strides since 2008 when this was posted, I still believe this issue is relevant today. With the amount of technology and access we have to the Internet, how is there still such little research and public awareness? I believe that a key part to the solution is focusing on generation Y. Millennials are now the largest generation in our nation. They learn and communicate through social media outlets, and they’re comfortable with self-education.
Being part of the ‘millennial’ generation, I like to think of myself as slightly more tech-savvy than my parents, and most people their age. Nobody has really talked to, or informed my generation about KD, and I would love to help spread the message through a visually responsive website or different media platforms.
I think one of the reasons why more people are not more empathetic towards KD is because there are very few personal stories available for the general public to connect with. People respond and relate to a personal cause. Posting videos and visuals are one of the most effective ways to inspire individuals to support an organization and help create a larger online audience. Out of the small percentage that do know of KD, it seems like the majority think of it as an “old man’s” disease, which is a misconception that needs to be changed. It's so important for people to realize Kennedy’s Disease doesn’t just affect one man; it affects a whole family.
Please let me know if you have any questions about me, my family or my ideas... Any feedback would be greatly appreciated. I would love to contribute in any way. We are also planning on attending the KD conference in the Fall :)
Thank you for your time and everything you do.