What are the best treatments for Axenfeld-Rieger Syndrome?

Regular eye checkups. There's really no "treatment" for ARS, but good medical care is essential.

Best treatment for ARS? I want to say, are you kidding? I am not qualified to answer this. But to folks dealing with ARS I would say, it is important to find doctors who know about ARS, or are willing to learn. Also, it is critical to have doctors who listen to their patients/parents of patients. We are the ones living with the symptoms. In other words if your doctor dismisses you, maybe you should find another doctor. Similarly, work with doctors who are willing to fight for you.

Case in point: Suprachoroidal hemorrhages resulting from the collapse of my retina following surgery to remove scar tissue from a previous operation left my eye shrunken and completely blind. This could have been avoided had the doctor taken seriously my post-surgical history from 3 previous glaucoma surgeries going back 20 years. Instead, the doctor listened to the insurance company. When I had my last glaucoma surgery my current glaucoma specialist fought with the insurance company every day for the three days, flat on my back with my eyes bandaged, it took for the pressure in my eye to get high enough and stable enough to release me from the hospital. I credit my doctor with my being able to see today.

In summary, ARS manifests in a wide variety of ways. Best treatments… don’t ask me, and, although it is helpful, don’t believe everything you see on the internet. Find primary care doctors, surgeons, ophthalmologists, dentists, etc. who are informed, who listen to you, who fight for you, and who you trust.

There is currently no treatment. Genetic testing and informed family planning are the only preventative measures.


....Cannibis helps manage IOP