My name is Cyrille and I live the Philippines. I am 23 and have sporadic aniridia.
I heard about the European Aniridia Conference on Facebook. Since it was online and totally free of charge, I was convinced enough to take part from the comfort of my home.
I registered and invited other professionals/patients to attend via social media.
I requested a free clinic appointment with an ophthalmologist from Moorfields Eye Hospital in London.too. Exactly four weeks later I received a email. I excitedly opened and read the message, then responded and thanked them for the wonderful opportunity.
During the consultation, I was able to ask tons of questions and Dr Sajjad Ahmad carefully answered all of them. I was very satisfied with his explanation and felt really happy to meet him virtually because it seemed that he’s very passionate about aniridia patients.
To the organizers, I am immensely grateful for constantly reminding me via email: before, during, and after about the event details, how to get involved, and contribute.
The two-day conference was very interesting with a wide range of topics, from inside the eye to outside, patients to vision scientists, and everything in between. I found it to be informative, educational, and helpful. Since I live many time zones away, I fell asleep during the afternoon sessions but I made sure to catch up with what I missed by watching the recordings on the website, which are available during August 2021.
Patients’ insights made me understand others easily. I realized how similar their experiences were with mine as they described how their uniquely challenging complications affected how doctors managed their cases. It’s true that doctors who are very competent and compassionate with aniridia patients are extremely difficult to find. Often times, we get referred from one doctor to another until we discover the best doctor for us. We all know that aniridia has different manifestations, but if experts all over the world could work hand in hand, then better therapies would arise as soon as possible.
The presentations helped me to know myself even more and gave some answers to my personal questions. I listened to perspectives from various speakers that widened my knowledge about this rare disease. Many things are still uncertain, but seeing that silver lining makes all the difference. One thing we can hold on to is that exciting possibilities are on their way for all of us.
This event gave me a chance to have some first-time experiences. I talked to a foreign ophthalmologist, attended a conference about aniridia, and virtually met people I can relate to in the Networking Room where I felt I belonged. I was pleased with everything that I saw: it was all accessible, inclusive, and it truly exceeded my expectations despite the toils. I also appreciated that the agenda was strictly and promptly followed.
Future therapies, incredible innovations, and cutting-edge research gave me a ray of hope and I look forward to a brighter tomorrow.
This conference was absolutely a shining success!