Bendy and Brave: My Life with Hyperflexibility!

I have hyperflexibility, which means I can bend my body and joints into unusual positions that most people can't. My joints are more flexible than average, and while it might look strange to some people, it doesn’t cause me any pain right now. Hyperflexibility, or joint hypermobility, is quite common in people with Down syndrome because they tend to have looser connective tissues, which allow their joints to move beyond the typical range. My parents say this flexibility sometimes leads to joint laxity, which means my joints are less stable and can make me walk a little differently.

When I started learning to walk, I wore braces on my feet. These braces helped support my ankles and feet, making it easier for me to balance and move around safely. Because hyperflexibility affects my joints, my parents are careful about which physical activities I participate in. Before joining any sports teams, I need to see a medical provider to ensure that the activity won’t put too much strain on my joints or increase the risk of injury. Kids with hyperflexibility are at a higher risk for joint dislocations, sprains, and strains, so extra caution is essential. Physical activities that strengthen my muscles, like swimming or physical therapy exercises, are great for me because they support my joints without putting too much stress on them.

Another condition that can sometimes affect people with Down syndrome and hyperflexibility is atlantoaxial instability. This is a condition where the first two vertebrae in the neck (the atlas and the axis) are more mobile than they should be, which can lead to spinal cord compression. One of my friends with Down syndrome had surgery for atlantoaxial instability when she was six years old to prevent serious complications. Although I haven’t had any issues with my neck, my doctors keep a close watch, as hyperflexibility can sometimes increase the risk of developing this condition.

As I get older, hyperflexibility might cause some problems, like joint pain or arthritis, because my joints experience more wear and tear than typical joints. Loose joints can lead to uneven movement patterns, and over time, this can contribute to joint instability and discomfort. Physical therapy can help me maintain strength and protect my joints from injury. For now, though, I’m lucky that I don’t experience pain, and I get to sleep in any position I want—something that most people can’t do as comfortably as I can!

Hyperflexibility isn’t all bad; it gives me unique abilities, like being able to reach places and bend in ways that others might find difficult. It’s all about learning how to use my body safely and appreciating what makes me different. With the right care and support, I can stay active, enjoy sports, and keep my joints as healthy as possible for the future.