Hello all I thought I would start this group with introducing myself and share some of the things that I struggle with. I was born with a rare disorder called Carpenter Syndrome which causes deformities through out my body. I get around okay but there are certain things that are harder for me to do. Some of these things include using my hands to grasp things or open things especially with my right hand. I also have a harder time walking long distances as I will start to get pain in my hips and lower back and also feel fatigued.
One of the main things that I have always struggled with from the mental side is body image. When I was younger I would get a lot of people who would stare at me and it always bothered me. My mom would always tell me that some people would just stare out of curiosity. It still had an affect on me though as I also got bullied some when I was younger. I am working on trying to love and accept the way my body is but it is definitely a work in progress.
What are some of the challenges or things that you struggle with? #skeletaldeformities #RareDisease