Acrodysostosis doesn't stop me.
- Nina Knight
- Dec 10, 2020
- 1 min read
Updated: Dec 13, 2020
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
Your story is incredibly powerful—thank you for sharing such a personal journey with Acrodysostosis. It’s a reminder of how resilience often grows in the face of uncertainty, and how important it is to keep seeking answers even when they’re hard to find. In a completely different space, navigating Real Estate in Cyprus can also feel overwhelming at first, especially when exploring modern Apartments across the island. If you're curious about what’s available or looking for investment opportunities, I’ve shared a useful reference that highlights some standout options.
Angela, your story is incredibly powerful—thank you for sharing your journey with such honesty and strength. Raising awareness about Acrodysostosis is so important, and your voice helps others feel seen and less alone. Just as navigating a rare diagnosis requires resilience and resourcefulness, smart online shopping habits—like using curated discount codes—can help others make thoughtful, value-driven choices in their everyday lives. If you're looking to save while you shop, Coupon Mama UK offers handpicked deals that make each purchase feel like a small, empowering win.