In this Rare on Air Stories bonus episode marking Rare Disease Day, we share Noah’s journey from the United States.

Diagnosed with Meesmann Corneal Dystrophy, a rare genetic eye condition, Noah endures chronic pain and vision challenges. Misdiagnosed and misunderstood for years, he faced immense physical pain and emotional battles, struggling to find medical professionals who understood his condition.

Noah’s determination led him to an accurate diagnosis of Ocular Neuropathic Pain Syndrome. Now, he is an advocate for better awareness of invisible disabilities, and he hopes to bring about positive change for those with chronic eye pain.

Visit rarediseaseday.org to share your story or get involved. Rare Disease Day is on 28 February 2025.