You may already know Laura Malvoyante from her videos we shared. This American-French digital content creator has been our contact person for ADOA(-plus) patients in France and their families since early 2025. Here is her personal story:
The Journey with ADOA: A Lifelong Mystery
My journey with Autosomal Dominant Optic Atrophy (ADOA) began at birth, although I wouldn’t know it for decades. I was born in the US and when I was just a baby, my mother noticed that one of my eyes wasn’t quite right – it wasn’t moving or focusing the way it should. Concerned, she took me to the pediatrician when I was 10 months old and we were quickly referred to a pediatric ophthalmologist. That was when I got my first diagnosis, but it wasn’t the right one. They said I had a lazy eye and astigmatism. Since my other eye had perfect focus, they prescribed glasses and started patch therapy.
For the first few years of my life, I wore an eye patch over my stronger eye and tried to train the weaker eye. I even did exercises by closing one eye, hoping it would improve my vision. But when I was five, they realized that the patch wasn’t working—the sharpness of my other eye had actually decreased. They stopped the patches and left me with my glasses while I continued with exercises to try to strengthen my “lazy eye.”
Growing up, I knew my vision was different. I had to sit almost on top of the TV to see it, and in class I always sat in the front row to see the board. Every time I went to the eye doctor, they told me my vision was complicated, but no one could explain why. This mystery surrounded my vision for years.
Drivers license
When I turned sixteen, I faced my next big challenge: getting a driver’s license. I couldn’t pass the traditional vision test at the Florida DMV, so my doctor gave me a special medical clearance to bypass it. With that clearance, I was able to drive, even though my vision at the time was 20/50 with corrective lenses.
Life went on and I moved to France when I was 22. My vision hardly changed, I adjusted my glasses every few years. But then, in 2023, at the age of 35, everything took a sudden turn. One day at work I noticed that I could barely read my screen, no matter how big I made the text or how I set the computer. Then I started losing my peripheral vision. I even fell down a flight of stairs on public transport – my declining eyesight had caught up with me in a way that I could no longer ignore.
Eventually I sought help from an ophthalmologist, who referred me to a neuro-ophthalmologist for further evaluation. After a series of tests, the answer I had been waiting for my entire life came. They found the OPA1 mutation, which confirmed that I had ADOA. The cause of my vision loss since birth. I was now legally blind, and the diagnosis confirmed what my family and I had long suspected but could not put our finger on.
Relief and sadness
In some ways, receiving the diagnosis was a relief. I finally understood the truth about my condition. But I also felt sadness about the years of misdiagnosis, unnecessary treatments, and challenges I had faced. My mother was also diagnosed, and we suspect my grandmother may have had it, too. A mysterious pattern of blindness that had haunted my mother’s family for years now had a name and an explanation.
When I was diagnosed in June 2024 at the age of 36, here in France, I was given a new perspective on what was possible. Despite living with ADOA my entire life, I now understand that it doesn’t have to define or limit me. Instead, it has inspired me to pursue my passion for technology and share my story as a content creator. Through my videos, I explore the tech world while raising awareness about ADOA and showing that while it impacts my life, it doesn’t hold me back. Even with the challenges of navigating digital spaces with low vision, I am determined to prove that obstacles can lead to new opportunities.
Do you live in France and have a question or comment for Laura? You can reach her at laura@adoa.eu.
