Introduction to Bietti's Crystalline Dystrophy
Hello. My name is Joe and I'm a BCD patient. I was diagnosed in 2018 and am fighting for my eyes.
If you or someone you know has been diagnosed with BCD, please read on.
I currently live in Los Angeles, California, and I have been in contact with other BCD patients around the world who are trying to drive research and genetic testing for BCD. Right now Bietti's Crystalline Dystrophy is an underdiagnosed disorder and because the "official" prevalance rate is so low, big companies are not willing to move forward with developing the cure/fix for us. That is why I started this website so we can band together, talk to each other, help each other in a group effort to fight for our eyes.
What I want to accomplish on this website:
- First of all - please fill out the form at the bottom! Link to Form
The main goal is to find each other across the world so I can pass along important information to you. I promise I won't spam you or share whatever personal information you wish to share with me. I will always ask for permission again later if you wish to partake in anything. - I wish to share my journey and my developments with you.
- I will share information and research I have done here, so it is easily accessible for patients like me.
- If you were just diagnosed with BCD (or even if you had it for a long time) and have any questions, feel free to contact me! If you want, I can also try to connect you with other BCD patients through all stages of life so they can tell you their story and how it relates to you.
- I want to link you to other initiatives and organizations related to Bietti's Crystalline Dystrophy.