Jaimie | Canada
Now the only thing I’m hoping for is a cure or even a way to reverse the progression of gyrate atrophy.
jaimie | Canada
I was diagnosed with gyrate atrophy in April 2007 at Sickkids hospital. This was after my mom noticed something different with my right eye and after seeing my optometrist and an ophthalmologist in my city they referred me to Sickkids where I got diagnosed. It took me a long time to accept this disease. Since being diagnosed I graduated high school, tried college, and got married. Now the only thing I’m hoping for is a cure or even a way to reverse the progression of gyrate atrophy.
Kat | United Kingdom
“During COVID I taught myself how to cook, catering to the gyrate atrophy diet. I love it so much and it genuinely made me so much happier and healthier. “
Kat | United Kingdom
I was diagnosed with GA when I was 11. It is an incredibly hard thing to go through and to come to terms with. After many years of hard work getting to grips with it alongside my parents. I’m now 19 and couldn’t be happier. Since being diagnosed, I have started my own Personal Training business, as well as studying Nutrition at University. Whilst I won’t go into studying GA at all, I still enjoy talking about it. And I love my food now more than ever.
A— | United Kingdom
“Since I was little, I was extremely near-sighted. When my older brother found out he had GA, my younger brother and I got tested. I had it and he didn’t.”
A— | United Kingdom
I found out I had GA when I was 12. Since I was little, I was extremely near-sighted but it was not until my older brother went to see the optician and they said we need to refer him to specialists. He found out he had GA, and then my younger brother and I got tested and found out I had it and he didn’t. My youngest 4th brother was diagnosed when he was 8 so 3 out of 4 of us have it. The diet was extremely difficult as we were on 7g of protein per day. When my parents had control of our diet, our levels were quite low. As I've gotten older, I don’t follow the diet strictly as it is extremely difficult but I’m doing very well. I work full-time, run a business, and have a young child. I’ve had cataracts in both eyes and had that removed, which has helped significantly. Can’t wait to see what the future holds with new treatments being available, it has been a long time coming.
Nikita and Amber | United Kingdom
“We are blessed with 2 lovely daughters. Both of them have been prescribed spectacles since the age of 3 due to poor vision.”
Nikita and Amber | United Kingdom
We are blessed with 2 lovely daughters. Both of them have been prescribed spectacles since the age of 3 due to poor vision. At the age of 9, my younger daughter complained of blurred vision and was diagnosed with vitreous hemorrhage. Since she was so small, the doctors were not in favor of surgery and let it clear in the normal course which took about a year. This triggered the doctors at Moorfields Dubai to check my older daughter's eyes too. After a series of tests, both my girls have been diagnosed with gyrate atrophy. My younger daughter Nikita has weak blood vessels as a result of which she keeps complaining of blurred vision. My older daughter Amber has mild cataracts which we check every 6 months.
Graciela | Mexico
”I decided to study medicine and during my training, I deeply researched this disease. I found that there is a treatment [the diet] that can stop visual loss.”
Graciela | Mexico
When I was 6 years old I started to realize that I could not see at night. Later on I developed “tunnel vision” and a doctor diagnosed me with gyrate atrophy. He told me that there is no treatment. Unfortunately it got worse as a teenager because they detected cataracts and a few years later cytoide macular edema appeared. I decided to study medicine and during my training I started a deep research about this disease where I found that there is a treatment [the diet] that can stop visual loss. Right now my vision loss has stopped and I have the dream to become a great doctor, even with my illness, and find the cure.
Fabricio | Argentina
“As a child, sunlight bothered me. I had cataract surgery in 2007 and 2008. In 2009 I was diagnosed with a high level of ornithine. I take pyridoxine and creatine daily.”
Fabricio | Argentina
In 2009 I was diagnosed with a high level of ornithine. I take pyridoxine and creatine daily. As a child, sunlight bothered me. I had cataract surgery in 2007 and 2008. In 2014, an OCT scan showed macular edema. I studied journalism and psychology and I work at the National Institute of Agricultural Technology. In 2013 I got a certificate of disability which helps to cover expenses for glasses and medication and a walking cane. I have tried reiki, alternative therapies, yoga, and acupuncture, as a way to bring more energy. The low protein diet has been difficult to follow. This year I went back to the recommendations of my nutritionist and redid my diet with low protein components.
Sean | United States
“It is tough to receive this diagnosis and navigate the vision changes. But it makes me more grateful for each moment and helps instill a desire to live my life to the fullest.”
Sean | United States
I had glasses for most of my life and I was diagnosed with gyrate atrophy when I was 12 years old. My mother was my biggest advocate and was very good at providing a low protein diet, which helped slow down the vision changes. About 4 years ago, I developed cataracts and last year I developed strabismus (eye turning). I still have good central vision but poor side vision and night vision. This is a tough diagnosis to receive as a patient and navigating the changes to your vision. But I believe it makes me more grateful for each moment and helps instill a desire to live my life to fullest.