About My Disability | Sacral Agenesis

I’ve mentioned my disability briefly on my blog and on my social media accounts. I’ve never really gone into full detail about what my disability is though! I thought I’d make a blog post talking about it more. So let me talk about why at 22 years old, I’m only 4 ft tall and use forearm crutches to walk! 

Sacral Agenesis

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, the lower half of my spine failed to develop all the way when I was in the womb. 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 honestly not a big deal to me. Unless I stand or sit for too long in one spot then it can get pretty sore. Honestly, 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, it’s probably because of your dislocated hips.” Imagine my shock. I guess I’m still learning more about myself every day!

Surgery

When I was being delivered at birth, doctors noticed that my feet and 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. The thing that I love most about those pictures is the huge smile I had on my face.

Today, my legs don’t bend all the way, less than 90 degrees, but I haven’t had many other 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 am very blessed I was able to have that correctional surgery!

Learn More On My YouTube Channel

If you’d like to know even more about my disability, I have a “Living With A Disability” series on my YouTube Channel if you’d like to check it out. The videos explain how I deal with it and even how I get around the house on an everyday basis.

If you have any other questions that I didn’t cover in this post, please feel free to comment them down below.

Well, that’s pretty much the basics of my disability but there’s much more to my story. I’ll cover much more in future posts. For example, what it was like growing up, the challenges I face, and more. Thank you so much for reading and getting to know a little more about me.