Hi, my name is Angela Shaye Benson. I’m 20 years old and I have Acrodysostosis.
When I was a kid my family didn’t know why I stopped growing they took me to the doctors, however the doctors were stumped. I was sent to specialist and eventually, we saw a genetic doctor who was able to confirm I had Acrodysostosis however they didn’t know much about my diagnosis. The doctors advised they felt it was really hard to diagnose Acrodysostosis because so little information and I myself only showed minor symptoms
. Mostly, I have hand and feet deformity, and small stature. I also have thyroid and vision issues but have not been able to confirm if these are associated with Acrodysostosis or not. I was lucky enough that I didn’t have major issues but it’s still hard to deal with.
Having Acrodysostosis didn’t stop me from playing a sport or running around or doing all the things other children do. For most of my life I played softball having Acrodysostosis didn’t stop me from playing any position. Now that I am older, having Acrodysostosis may bring on new challenges but I know I have a support group that can help me get through it, learning more about Acrodysostosis will help not just me in adulthood, but all other people possibly living with this diagnosis unaware of what symptoms are associated or how to best treat and care for people with Acrodysostosis.
I hope you hearing my story give me an idea of what living with Acrodystosis is like for me. Thanks for listening. Xo- Angela