The Struggle to Find Care: Navigating Life with AMC and the Search for Understanding Doctors

Living with arthrogryposis multiplex congenita (AMC) has been a lifelong journey, one filled with both triumphs and challenges. For those of us with this rare condition—affecting approximately 1 in 3,000 babies—finding the right care can feel like a never-ending battle. In my experience, it’s been especially difficult to find orthopedic doctors who are familiar with my condition and willing to provide the care I need. And unfortunately, this isn't an isolated experience; it's something many of us with AMC face.

For those unfamiliar, AMC is a condition that causes joint contractures and limited range of motion, often affecting multiple parts of the body. It’s a lifelong condition, and while there are treatments and therapies available to help manage it, much of the medical community is still not fully educated on how to properly care for people with AMC as we grow up.

As a child, I was fortunate enough to receive medical care that helped me survive and navigate the early years. But as I got older, I started to notice a gap in my care that became impossible to ignore: what happens when we grow up? AMC doesn’t just disappear when we reach adulthood. It’s a part of who I am, and yet, there’s still a lack of doctors who are equipped to handle the ongoing needs of those of us living with this condition.

So, why is it so hard to find doctors who want to work with us? Why does it seem like the medical community’s attention to AMC tends to stop after childhood?

The simple answer is that AMC is rare. It affects only a small portion of the population, and many doctors simply don’t have the specialized knowledge needed to treat adult patients with this condition. As a result, we often find ourselves navigating a world of doctors who may have heard of AMC, but don’t truly understand how it impacts our lives in the long term. And that, in turn, means they don’t know what to do when we need help.

As someone who has grown up with AMC, I’ve tried to raise awareness about the condition. I’ve made it a point to speak out and tell people, “Hey, we do grow up. We need to be thought about.” There are countless young people with AMC who face challenges as they transition into adulthood, yet they’re often forgotten once they leave pediatric care. So, the question remains: Who guides us when we grow up and live on our own?

We need medical professionals who are not only knowledgeable about AMC but who are also compassionate and willing to take the time to understand the unique needs of adults living with the condition. As we grow older, our needs evolve, and we often need more specialized care. We shouldn’t be left behind simply because our condition is rare.

I’ll be the first to admit that AMC is not all of me. It’s just one part of who I am. But that doesn’t mean it should be overlooked or dismissed. It’s the downside of having a rare condition: the lack of resources, the lack of specialists, and the lack of understanding from a medical community that doesn’t know what to do with us once we reach adulthood. I’ve learned to live with AMC, but that doesn’t mean I shouldn’t have access to the care I need.

That’s why I continue to share my story. I want to raise awareness, not just for others like me, but also for the doctors and healthcare providers who may not be aware of the ongoing needs of AMC patients. I want people to understand that, even though it’s a rare condition, we are here, and we deserve the proper care and attention—now and in the future.

For those of us with AMC, it’s more than just a condition we manage. It’s a part of our lives, and it will be for as long as we live. All we ask is to be seen, heard, and cared for by doctors who understand the full scope of our condition—and not just in childhood, but throughout our lives.