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