Up until I was 10 years old, I never thought there was anything different about my arms compared to the limbs of any other kid. But my mom, like any concerned parent, noticed something seemed off and wanted answers. “Why is it that when I give my child M&M’s they slide right out of her hands?” she’d wonder.
So, I finally saw a specialist, got X-rays, and waited some more, until I was finally diagnosed with radioulnar synostosis just before I turned 10. You’re probably thinking, what the heck is that? And I don’t blame you, because it’s never really talked about.
Radioulnar synostosis is characterized by an abnormal fusion between the radius and the ulnar bones, and it affects the rotation of both my forearms.
When these bones are connected as opposed to separated, your range of rotation is quite limited. Picture this: When I hold both of my arms out and try to rotate my forearms so that my palms face up toward the ceiling, I reach my maximum rotation range when my hand makes a 45-degree angle.
This disorder typically occurs congenitally (meaning the problem is present from birth) but it can also happen after a physical trauma, Michael Hausman, M.D., chief of hand, wrist, and elbow surgery for The Mount Sinai Health System, tells SELF. Sometimes the condition occurs completely by chance when you’re born, like my case. Other times it’s the result of an underlying genetic condition, like Treacher Collins syndrome or Apert syndrome, Julia Louisa Iafrate, D.O., a sports and dance medicine physician and assistant professor in the department of rehabilitation and regenerative medicine at Columbia University Medical Center, tells SELF. The actual number of cases is unknown, with some orthopedic physicians and surgeons only seeing a handful of congenital cases per year, according to Dr. Hausman and Dr. Iafrate.
The radius and ulnar bones are supposed to separate during your development before birth. But with congenital radioulnar synostosis, a bony bridge forms between the two instead, connecting them together due to underdevelopment of the proximal joint, which connects the radius and ulna bones at the elbow. “The formation of the skeleton is slightly flawed,” Dr. Hausman says. “The normal shape of the joint wasn’t quite achieved during fetal development and the two bones never completely separated.”
Congenital radioulnar synostosis is typically diagnosed at a young age, and if surgery is required to correct severely limited rotation, it typically has to happen while a child’s bones are still forming. However, trying to manually separate the bones by surgery in congenital cases has less predictable success rates. “If the bones are fused together so much it looks like there’s only one bone in the forearm, the bridge could grow back on its own even after surgery,” Dr. Hausman explains.
Surgery wasn’t an option that made sense for my particular case when I was younger, given that I was already 10 years old by the time I was diagnosed, and the success rate of a surgery for me would have been unpredictable.
Growing up, the limitations of my arms made a lot of activities feel awkward or unsafe for me to do, so I held back.
I often felt alienated playing sports or doing group workouts at tennis and golf camp or with my track team through most of my childhood and teen years. Many coaches and trainers would say, “Rotate your arms out just a little more so you can get the right swing,” or they would try to push my elbows, move my hands, or rotate my shoulders for me, assuming that maybe I just wasn’t paying attention when they explained various movements to me the first time.
I joined a cycling team because I thought, maybe I should stick to sports that don’t require me to exert force on my arms and wrists at all. I went to my first practice and realized bending over the bike for long periods of time still aggravated my wrists. One day, without even realizing it, I noticed that I had subconsciously adjusted my body positioning: Instead of holding onto the tops of the bars, I was holding the sides. I started doing this during practices and races, and it occurred to me that it would be my job, my body’s job, to problem-solve and switch up my form on my own to fit my needs. I needed to figure out my new normal.
Eventually I stopped trying to do things the way my teammates and peers did and instead started experimenting and modifying my own way.
Even something as seemingly basic as a push-up required putting my own spin on it. To try to lessen the uncomfortable pressure I would normally feel on my hands and wrists, I tried doing push-ups on my knees to reduce the amount of weight on my upper body. Sometimes, when I am really unsure of how to make a modification that works for me in the moment, I’ll dig through Youtube videos or workout apps that have photo or video demonstrations to find exercises that do work for me. Working with a physical therapist with knowledge of radioulnar synostosis or even just general forearm, hand, and wrist complications can also help if you’re really lost or experiencing pain during certain activities.
I’ve actually enjoyed learning to modify on my own—but it can still be frustrating when I don’t feel understood by people because part of my body is atypical. Believe me, I’ve watched recordings of myself at fitness classes or while reviewing tapes after a sporting event and thought my arm and hand movements looked a little ridiculous. Some would probably even think I don’t look very athletic, since our culture has a pretty narrow definition of what athleticism looks like.
When a coach or trainer corrects my form or doesn’t seem to believe me when I say, “My arms don’t bend that way so I can’t do that move,” I can feel discouraged or even embarrassed. I’m not making excuses or being lazy; I’m working around my body’s limitations. And just because you don’t necessarily see that physical limitation, or even know about my disorder, doesn’t mean it’s any less valid.
I’d love for the resounding message in all gyms and fitness environments to be “do what works for your body” instead of “Your form is wrong, do it this way” or “You can go harder and faster than that.”
That said, I know that I’m fortunate that my case is not as severe as some others with radioulnar synostosis. And I’m aware that my condition isn’t as physically limiting as other types of disabilities can be when it comes to fitness and just being able to move around in life in general. I can still do the things I love to do, albeit with some adjustments. And there are a lot of everyday objects that can be used to make easy modifications, like a yoga block or padded mat that provide enough extra support for my forearms and wrists. So I’m grateful for those things.
As I’ve gotten a little bit older I’ve learned to speak up for myself a bit more and tell fitness experts and trainers up front that I need to make modifications for myself. I use language like, “I have limited mobility in this part of my body, so I will be modifying certain moves, but do you have any suggestions?” Being assertive in the fitness space makes me feel empowered and less insecure about my abilities. And I know now that I can still be athletic and fit even if I can’t do things the way everyone else does them.