Well as many of you know its Fragile X Awareness Month and that yesterday( July 22nd) was Fragile X Awareness Day. I also hope that many of you have enjoyed the Fragile Facts that I have posted as my facebook status each day during this month. I hope that you have learned something new or more about Fragile X than you already did.
Fragile X really didn't mean anything to me when I was 10 years old when I was told that I had it. In 2008 it became a bit more meaningful to me when I came down with depression ( more about that in my high school post) Anyways, I went to my first FX Conference in St.Louis and learned so much about Fragile X and what it was. Also my first time getting introduced to other people by my Grandparents and them telling people that I have the full mutation and then getting the jaw dropping look that they can't believe that I have it. I also got to meet females like me who have the full mutation of FXS and they had the same symptoms of me, like the learning issues, the anxiety, and even depression. It was great hearing their stories on the Female Panel. I didn't feel so alone anymore after meeting them and hearing their stories. I knew I wasn't the only girl who was struggling living with FX.
I knew going into my Junior Year that I had to do a big research paper for English class and I decided to do it on Fragile X and educate my teachers and classmates about FX. I got a lot of information at the Conference and online from the website. I did a good job on the paper and even gave it to my family members who weren't too familiar with FX to read and they really enjoyed reading it.
In 2010, I went to the Conference in Dearborn, Michigan. It was my first time on the Female Panel. It was my first time talking in front of a big crowd of people of 50 or more. Once again I got to meet some new girls with the Full Mutation of FXS. I got to share my grade school and high school experiences. I amazed a lot of parents and got lots of compliments on my talk and that they hoped for the best for their daughters with FX. I did make one Mom cry, because I went to a Catholic grade school and high school with having FXS and she was so inspired by that.
Last year, I went to my third Conference in Miami, Florida. I spoke on the Female Panel a second time and once again got a lot of compliments on my talk. I got to see a lot of the FX Community which is pretty awesome! ;-)
Now, Fragile X Awareness means A LOT to me. I want people to be aware that this is actual genetic disease that I have it and that many others are affected as well. I do wear my FX shirts out in public often in hopes that someone asks me what it is or says I know what that is. Now I have my blog to tell people about my experiences with living with FX. Anyways, Iam getting used to the jaw dropping look of surprise when I tell people that I have FX. If anyone has any questions about FXS just let me know and I can answer it the best that I can. I do know lots of people in the FX community that could help me answer it as well.
Well I hope that you all enjoyed this post! :-) New one SOON!!!
With lots of love,
Chelsea
Learn more at: http://www.fragilex.org/
You can also read some stories about families in the FX Community: http://www.fragilex.org/community/faces-of-fragile-x/
