My name is Julia and I live in Germany.
I’ve been myopic since the age of seven and progressed to high myopia but was able to get on very well with glasses and contact lenses. My father was highly myopic with the same prescription as me but never experienced any issues that couldn’t be fixed with correction. I grew up in a very small town, didn’t own a cell phone or a computer, and was and still am a tomboy who spent hours playing outside each day rain or shine.
In my early forties, I experienced small distortions and wavy lines in my right eye. I received the bad news about dry atrophy in both eyes with the shrug of the shoulders and a comment “very sorry but there is nothing we can do to treat it or stop it”. My reaction still is that of complete panic, anxiety and mourning over my lost future that I as a young woman envisioned for myself and my family. Apart from the constant emotional roller coaster of anxiety and crippling fear, I struggle reading print and see faces in distorted ways. All because of a few extra
millimeters of eye length I inherited.
I never heard of this disease before. I’ve spent hours online and found there isn’t much info and research on MMD out there, other than a few scary epidemiology studies. I’ve joined several support online groups that bring together people with MMD and realized this cruel disease is growing worldwide at an alarming rate and changes people’s lives forever in the midst of their most productive and happiest years.
It’s worth mentioning that my medical records from the first two doctors I visited reflected incorrect diagnoses of “myopic AMD” and generic “macular disease”. I don't understand the reason behind it. Since the reports also mentioned retinal thinning, high myopia and
dry atrophy changes, I was able to find a diagnosis of MMD through Internet search. With this suspicion, I went outside of my health insurance network and found a private ophthalmologist who diagnosed me along with the stage of the disease. He was the first person ever who measured my axial length. It's important to have the correct diagnosis in your medical file, so diseases can be properly tracked and accounted for in order for companies and researchers developing drugs and treatments to be aware of the size of the patient population, and find the best places to do their clinical trials.
It’s hard enough knowing you have a blinding disease and that those few extra millimeters of eye length will eventually ruin your life. It’s equally painful to realize your disease seems to have been overlooked for decades. We feel abandoned and forgotten. I still cling onto hope that a brilliant mind out there won’t accept this status quo, that’s all I have left. It would mean absolutely everything to me and my family knowing that stem cell, biomaterial or other types of research are being trialed on Myopic Macular Degeneration as well and if successful, can halt or even reverse vision loss for me, all the others and future generations as well.
Thank you for the incredible work you do.