Our website (www.omapraxia.com - you may access it as well by typing www.ocularmotorapraxia.org) has a section dedicated to names and contact information of doctors and hospitals who have knowledge of OMA. Recently, we asked our members on our social media to share with us the name of their doctors, and they did! So now we have more than 20 doctors on the list, from around the world, and hopefully the list will keep growing.
I believe one of the reasons why it took longer to diagnose Patrick, was because his regular doctors didn't know anything about OMA. But after my insistence that Patrick wasn't OK, they referred me to a neurologist at Children's National. Luckily, their neurologist knew about OMA, and he immediately referred to us a Pediatric Neuro-ophthalmologist, who has seen many patients with this condition. Even though neither of them were experts on OMA, they knew the important factors, and that made a whole world of difference to us.
From just having the peace of mind of knowing what your child has, to knowing what the course of action will be in regards to his treatment and prognosis, finding the right doctor is the best thing that can happen to you. It is, when dealing with any medical conditions, and even more so, with RARE medical conditions.
So, take a look at the list. Maybe you will finally find a doctor in your area. Maybe you already have a doctor, and if that's the case, please share his/her name with us. You are so lucky to have found a doctor familiar with OMA, and we hope you share a bit of that luck with many other people affected by OMA.
Happy Leap Day!
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