Disability | Lifestyle

My Disability

August 23, 2018

If you’ve ever seen me in person, my physical disability is very apparent. At 21 years old, I’m only 4 ft tall and use forearm crutches to walk. Now you may be wondering, what’s your disability?

I was born with Sacral Agenesis or other known as Caudal Regression Syndrome. I could try to explain what that means in all the fancy medical terms that doctors have given me over the years, but all of that even confuses me. To put it simply, my lower half failed to develop all the way when I was in the womb so I only have part of my spine. My disability is pretty rare and only occurs about once every 25,000 births!

I was also born with permanently dislocated hips. That might sound pretty intense and painful, but it’s not a big deal. Unless I stand or sit for too long in one spot then it can get pretty sore. Fun fact, I didn’t even know my hips were permanently dislocated up until a few years ago. I was complaining about how sore my hips were from standing and my mom just said, “well Amanda, it’s probably because of your dislocated hips.” Imagine my shock. I guess I’m still learning more about myself every day!

When I was being delivered, doctors also noticed that my legs were stuck in an outward position. To fix this, I had to have a correctional leg surgery to get them back to a normal position.  The surgery happened right before my first birthday. I’m actually thankful for this because not only was it successful but I don’t remember a thing. Although, my mom does have a couple of photos of baby me in huge pink casts on both legs. I had a smile on my face though. Today, my legs don’t bend all the way but I haven’t had many complications. The worst part for me when I was younger was getting over the insecurity of the big scars on my legs. Now, I can wear shorts without even thinking twice. Scars tell a story and I’m happy to tell mine.

  • Fun Fact: Have you ever seen American Horror Story: Freak Show? If so, you may remember the woman with half of a body. Rose Siggens, who just died in 2015, was born with Sacral Agenesis. Unfortunately, many people born with Sacral Agenesis end up having to get amputations due to severe complications of the lower extremities.

I also have multiple “Living With A Disability” videos up on my YouTube Channel if you’d like to check those out 🙂

Well, that’s pretty much the basics of my disability but there’s much more to my story. I’ll cover in other posts what it was like growing up, the challenges I face, and more. Thank you so much for reading!

Xoxo,

Amanda Burnett

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