The Reality of Arthrogryposis Multiplex Congenita – Guest Post by Nikole

Nikole’s guest post is the 49th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Nikole!

Hello readers, I’m Nikole! I’m a 28-year-old blogger from the eastern shore of Maryland. I grew up around the beautiful Chesapeake Bay, so I have a deep love of nature and being by the water. I like to say my childhood was normal. I had two loving (adopted) parents, several cousins I grew up with as pseudo-siblings, and… oh yeah, I’ve never had use of my hands or legs. Maybe things weren’t ‘normal’ to most, but it was and is my normal.

Nikole is smiling and holding a very large cuddly bear with a red bow.

My Story

I have several diagnoses. Arthrogryposis, Scoliosis, Clubfoot, and Major Depression. Today I’m going to focus mainly on the first.
Arthrogryposis Multiplex Congenita, it’s quite the mouthful, isn’t it? It varies greatly between different people and is only as common as 1 in every 3,000 live births. So, we’re pretty rare.

Actually, it is not a very specific diagnosis, but a finding that can be associated with many different disorders and conditions. It is thought to be related to decreased movement in the womb, which can have multiple causes.

Common Symptoms

One of the Hallmarks of AMC is joint contractures. This means the joints are stuck in one position, either bent or straight. They do not move. Other things that may come with AMC are scoliosis, clubbed feet, hips out of sockets… And many more!

Amyoplasia, the type I have, occurs randomly and has no genetic cause. It just happens.

How it Affects Me

For me, it affects all four of my limbs. My knees, ankles, elbows, and wrists are fused. My elbows are at an almost 90-degree bend, with almost zero range of motion. I have had surgery on them to get them to this degree, as they used to be much worse. My legs have had to be rotated to face the “right” way, and I’ve had many clubfoot surgeries.

Most of my early childhood was spent in the hospital. I don’t remember a lot of it, in fact, to this day I only remember my arm surgery.

Because of all the contractures, I have no use of my limbs. I can feel through them, move them to some degree, but they are weak and mostly useless. I need help getting dressed, going to the bathroom, getting a bath, and getting around. I am incredibly fortunate that I not only have loving parents who help me with this, but one of my cousins has stepped up as my personal care assistant to help spread the workload out and give me some independence from my parents.

I hate listing what I can’t do, however, because it sounds like I’m suffering. I’m not! I can draw and paint by mouth. I have a mouth stick that I use to both write my blog posts and play video games. I have a wheelchair to get around in. A message I want to pass to everyone reading this is a disability isn’t inherently bad, it just IS.

How I Learned to Adapt

One of the gifts that being disabled from birth is I learned to adapt early on. If there was something I couldn’t do like an abled person, there had to be a way I could as a disabled person.
I wanted to draw, so I put a pencil in my mouth and learned to.

Nikole is laying on the floor, with her black cat sitting comfortable on Nikole's back. She is holding a drink and using her mouth stick to type on her laptop.

I wanted to type, so my parents bought me a mouth stick. I wanted to ride horses, so my mom found a group for therapeutic riding.

I’ve had the privilege of having a support system that supports what I want to do. Not every disabled person has that, nor does every abled person. But I have been beyond blessed to be able to have the resources to do almost anything I have ever wanted to do.

Have I Changed As A Person?

AMC does make some things harder, but it taught me to rethink my situation and find solutions. That is worth it in my book. I don’t feel as though I’m limited by my disability, I feel as though my disability gave me a perspective on the world that I might not have had without it.

It’s a part of who I am.

But I also don’t know who I would be otherwise. If I had been born abled I sometimes wonder; how different my life would be, my thoughts, my views? I am acutely aware of how inaccessible the world is. I see how far we’ve come with disability rights and how far we still need to go. I wonder if I hadn’t been born this way if I’d have never become an advocate or blogger in the disability community.

Nikole and her Dad are smiling at the camera. They are on a pier with water stretched in the background.

My Favourite Villain

You know, this is a hard question for a nerd like myself. There are so many that I love, and while I’m really tempted to pick one that might fit this post… I’m going to have to say, Harley Quinn. I’ve loved her since I was a kid. Beauty, brains, and a total badass. What’s not to love?

Thank you Nikole for raising awareness and sharing with my readers and me!

3 thoughts on “The Reality of Arthrogryposis Multiplex Congenita – Guest Post by Nikole

  1. You amaze me Nikole.. as do all the shared posts on here. So good to hear how you dont just cope but manage your conditions in such a positive way. Proud you and proud parents. Much love xx

    Liked by 2 people

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