My name is Tara and I write this letter as a patient advocate on behalf of my husband Miguel.
We live in Spain and are parents of three children, two boys and one girl. I met my husband at high school and a few years after graduation, we got married. While I was pregnant with our first child, about twelve years ago, while in our mid-twenties, Miguel experienced a sudden appearance of a blank spot in his right eye. Rush to the local ophthalmologist revealed a diagnosis of dry myopic changes. We were not sure what this meant as there was no other name given to the diagnosis and no treatment was suggested. We went on with our lives until the blank spot started getting bigger and was accompanied by blurriness of vision around it. We drove to a large hospital where a retina specialist finally gave us the diagnosis of dry Myopic Macular Degeneration. The right eye was damaged more than the left one, but even the left one had signs of dry atrophy and it was just a matter of time before the macula was affected. We researched the condition as much as we could and quickly realized that the only treatment out there were injections for the wet form of MMD (mCNV) and that for dry myopic atrophy, there were no ongoing medical trials or treatments in development. That still unfortunately continues to be the case today.
We still both struggle to understand how one can go from being someone affected by the most common refractive error and achieving perfect vision with contacts or glasses to a patient with an incurable eye condition that causes irreversible vision loss, especially without any previous warnings and at such a young age. Myopia runs in my husband’s family, so there is a clear genetic link.
As Miguel’s “dry changes” (scotomas and foggy vision) kept progressing over the past decade, he has had to give up his passions which mainly revolved around sports and outdoors - he used to be a very physically active person, an avid bicycle rider, mountain hiker and a passionate soccer player. He had to give up a job that he loved and is unable to provide for his family the way he feels he should . This is not a sentiment I share, but as a young father in his mid-thirties, he feels like an increasing burden to me and our three kids. It’s extremely difficult for all of us to envision what our future will look like as Miguel’s retina and macula further degenerate.
It’s utterly heartbreaking for me to watch my young spouse who once used to be so active, independent and full of life to go through this ongoing agony, and what I now know will be a lifelong battle with sadness and depression unless a treatment that can offer hope to either halt or reverse some of the vision loss, comes along.
I turn to you with an appeal for research into MMD and with hope that in my husband’s lifetime, a curative treatment will be found.