Youtube and Friends perspective of FA

I started a youtube channel and I couldn't be more excited but at the same time nervous. I know what you are probably thinking by the title of this post...another person starting youtube. Yes you are right I am doing it, and if you know me at all I am an extremely hesitant person. So jumping into something like this not like a usual thing for me to wanna do. But I want to raise awareness for FA so I am going to take this jump into something that seems very scary. I mean putting myself out there for the entire world to see is terrifying, but I am going to try.

I am super excited to take this leap and try something new and I would love for you guys to check my channel out. I will be posting lifestyle with FA type videos every week.  So stayed tuned!

This weeks video is all about a friends point of view. I sat down with one of my best friends Lauren to find out what she had to say about FA. 

Here is what she had to say!

https://youtu.be/C9eAhtpp_AA

I will say one thing and that is that everyone deserves a friend like her and I am truly grateful that she is in my life.

I hope you enjoy the video and subscribe to my channel for more!

https://www.youtube.com/channel/UCViE3a_QPR29lLFWxn8rBBg

Growing

I was hit with debilitating, dream crushing news when I was just 13 years old. 6 years ago around this time of year I was diagnosed with a rare, neromuscular disease called Friedreich's Ataxia which has no cure or treatment. For the next 5 years I went through a period where I did not want to talk, hear, or even think about FA. In my mind if I did everything I could to ignore it, it would eventually go away. Everyone that I have talked to with FA says they go through that phase and for some it lasts longer than others. That phase of hopelessness, loneliness, and denial. 

I had always been curious what the FA community was, and then one day I decided that I didn't want to live like this. Little did I know my life was about to become a whole lot brighter. I slowly started following people with FA on instagram and dipping my toe into the water. I began to understand the importance of being a patient advocate, and raising awareness for an FA. 

I now participate in clinical trials and studies, I lead patient support groups, and I am always willing to raise awareness. Never in a million years did I think that I would be doing what I am doing today and I feel like I am only starting. I know I wouldn't be where I am at without my family, friends. the FA community, and my almighty God.

Just know that whatever you may be struggling with, or however deep the hole you're in. There is a light at the end of the tunnel and there is always a way out, and everyone grows at different rates.

For I know the plans I have for you, "declares the LORD" plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11