Me Me Me Me Me Me

Tuesday, January 13, 2015

Why being an advocate of HD is important



Good afternoon readers,


Today I am going to share a little about why being an HD advocate and sharing my story with the world is so important to me.


I have hope and believe in a cure of Huntingtons Disease. In order to find better treatments and a cure there needs to be more awareness and money raised. At the HDSA convention it was said that HD is not a rare disease but a rarley know disease.

Another reason why it was so important for me to begin my blog in the beginning every where I went I felt like the elephant in the room, constantly trying to figure out who knew and didn't know. I had the fears of what people think of me.  I was a 23 year old, showing signs of an abnormal disease at a very young age for HD. By starting my blog and sharing my story with the world all those thought went out the window.

I refuse to let this disease get the best of me. Being an advocate takes all my frustrations, angers, and fears about HD and turns it into a positive light. I will not stop until there is a  cure.

I love advocating for all of those people who lost their life, who are too sick with HD to be an advocate- especially my Dad and family.

Did I ever think that my sisters idea for me to start a blog would come to this, having someone write an article about my HD journey, and having people I don't even know around the world read my blog?? Not once - to me I'm just a normal person who has become an advocate for a rarely disease.


If you have been inspired by my story and wonder what you can do-tell someone about HD, share my blog, donate to the HDSA, or complete the HD pie in the face challenge and challenge your friend.

Continuing to live fearlessly, 
Alexandra



No comments:

Post a Comment

Thanks for taking the time to leave a comment.