Today I wanted feature something a little different. I know a few months back I did a post on here about myself giving just a sneak peek into my life. I am not so good at explaining it all in detail although I try to and I love answering questions about my life and what I go through on a daily basis.
In the upcoming weeks I am going to be featuring a couple of different disability oriented organizations. This post today is about my disease. The reason I am attaching this video is because I want you all to get to see what life is like for me.
This video is of a girl, Bernadette, who has Charcot Marie Tooth (CMT) disease like me. Her ability to walk is worse than it is for me however the way that she walks is something that I have seen a lot from other people with CMT. I am thankful that I still have the strength to walk semi-normally and that my real problems come from neurological pain. Please take the time to watch this video and to leave me some comments. Ask questions and I WILL answer them all. No question is a stupid question here!
Ashley, You are so so so brave for sharing this! I am like you in the way that I want to talk about my disability. I think more people need to talk about their struggles. These kinds of things that make us unique and different are nothing to be ashamed of! Thank you for sharing and for starting this series. I look forward to reading more!
ReplyDeleteThank you for sharing this. I have not heard of this before. I do appreciate when people share their struggles so I can become more aware of others.
ReplyDeleteThanks for sharing this, Ashley!
ReplyDeleteI can relate to your struggles although my disease has a different name: Andersen Tawil Syndrome. I do understand what it's like to live with a disease that no one has ever heard of and in my case, my disease appears to be invisible to most people. Thank you for being brave enough to share and help bring awareness not only to your disease but to other rare diseases as well.
ReplyDeleteValerie, I am like you and at the stage that I am at. It is invisible. People do not understand when I fall without tripping over something or why I cannot carry 2 gallons of milk or struggle with stairs.
DeleteWe have to stick together and support each other because others have no clue what it's like!
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