Isabelle, a PROSE Patient, Shares Experience with Neurotrophic Keratitis
Isabelle's story and video are shared with permission. https://www.youtube.com/watch?v=WhMNmLTt7j4&t=236s "It all started when my friend was doing my makeup. 'Are you aware you have this cloud-looking thing on your eye?' Having eye problems was not new to me. I have had Neurotrophic Keratitis - a disease that causes my corneas to erode - in my right eye since I was 5 and in my left eye since I was 16. I accepted the fact that my vision was never going to be perfect; I knew it was getting worse as I aged. I already needed to use eye drops all the time because of the constant dryness. Hearing my friend make that comment though, I realized maybe my condition was worse than I thought. Seeing a Corneal Specialist After visiting a corneal specialist, I heard for the first time that I was at great risk of going blind. All of a sudden, I was having my eyelids partially sewn shut to limit exposure to air, new sets of drops/ointments to try, lifestyle changes such as wearing ski goggles outside in the winter to protect my eyes, and going to the eye doctor so many times a month I had the eye exam letters completely memorized. While my left eye vision was significantly better than my right, I was still having trouble seeing things clearly. I needed a large font on my phone and a bigger TV - and squinting at things became the norm. Failed Treatments Failed treatment [...]