Tuesday, 28 June 2011

Perspective from a 20 year old

A young woman with Beals Syndrome recently posted the below on an online Beals Support Network.  I asked her if I could re-post it here for those interested in what it has been like for her living with Beals Syndrome.

I'm 20 years old and have a mild form of Beals. Although it is mild, it still hurts (I'm a visual artist and I'm always using my hands) and I have to deal with people commenting on my appearance, usually describing my features as "weird" or just "ew." 

I wanted to say something to all the parents of kids with Beals. Kids with Beals need to build a tough shell, because other kids can be cruel as hell, and if they let it get to them, it'll ruin their life. I had to realize on my own that my "weird" appearance was the one I was always going to have- and I would have to come to love it. 

Please tell your kids to stay strong, and pity the people who are rude to them. Instead of feeling hurt by others comments, tell them to look at how sad it is that they would want to hurt someone's feelings in the first place. I grew up fast (most of us with Beals do, at least physically) and am thankful for all the struggles I had to deal with early on, because I would not be able to move forward and achieve the things I have accomplished today without going through it all. 

If you have a teenager, or even a younger kid, and they need someone to talk to, please feel free to message me. Actually, I encourage you to. It's a very lonely feeling knowing you suffer from something that most people don't even know exists- let alone other kids. 

Today I am a happy and successful young woman (so far...) and the fact I have Beals has not slowed me down. It has done the very opposite... it has motivated me to do everything I want to do in life, and all those stupid comments from other kids officially have no validity whatsoever.

Keep strong, and carry on.  Lily


  1. This is a great post Lou. Lily sounds like a remarkable young woman. Isn't it interesting that she comments on her strength and how fast she had to grow up. Evelyne is already so strong and determined to do the things other kids can do. What a blessing that God has given her this strong spirit. Love, Dad

  2. Love this post. My daughter's variant is mild also. Could you direct me to the Beals support forum? Thanks!

  3. Hi, 'TheNormalMiddle'. I have added the links for the forums I have discovered on the sidebar of the blog. Louise

  4. I am 26 and have Beal's. I have it more severe as Evelyn does. It is a genetic aspect that runs in our family. I am more than willing to share any information or perspective on growing up with Beal's. I loved this post by Lily. I definitely felt the same way growing up. My hands being different was, and honestly sometimes still is, the hardest difference to deal with having this syndrome. jenniegurl03@yahoo.com