Fighting RP on the Foundation’s Frontline

Michelle Glaze, the Foundation’s associate director of professional outreach, shared her personal story with retinitis pigmentosa (RP) in the film ‘Decoding disease,’ as part of the International Council of Biotechnology Associations and Biotechnology Innovation Organization's Nature's Building Blocks series, produced by BBC StoryWorks, and presented by Blueprint Genetics.

Watch the 'Decoding disease' film and read her Beacon Story below.

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By Michelle Glaze

My vision loss journey started long before I was aware that I had a retinal disease.  I grew up in a small town in California.  My days were full of exploration and excitement.  A tomboy at heart, I was always outside, active and engaged in sports.  My first glimpse of any visual challenges surfaced in my early 20s after a long day of co-ed softball.  My eyes took a long time to adjust to the change in light from outside to indoors.  Shortly thereafter, I went to the optometrist for a checkup and learned that something was atypical with my retinas.  The physician recommended that I see a retina specialist for further testing.

About a year later, in 2004, I was clinically diagnosed with an inherited retinal disease.  As one can imagine, this is a devastating moment, one that I will never forget.  I would lose my vision over time and there was not a treatment.  Over the next several years, I did my best to ignore the diagnosis.  I was in complete denial, determined that my vision would not worsen.  As I noticed changes in my sight, I did everything possible to hide the signs.  I was embarrassed, angry, and afraid. 

Four years after my diagnosis, my beautiful son was brought into this world and that changed everything.  He inspired me to push forward, adjust, and take control of my visual challenges.  I wanted to DO SOMETHING – fight to save my vision.  This deep desire led me to the Foundation Fighting Blindness.  In 2011, I shared my story for the first time and formed a VisionWalk team. It was empowering to be part of the mission to drive research in hope of finding treatments and cures for blinding retinal diseases.  My son was by my side during that VisionWalk and has been with me every step of the way ever since.

After being encouraged by my retina specialist to do so, I sought genetic testing in 2013. I was very concerned that my son may have the same genetic disorder as mine.  Additionally, I wanted to know my genetic mutation so that I could find and follow any research that may be underway.  Genetic testing results indicated mutations in RP1 to be the likely cause of my retinal disease, retinitis pigmentosa.  Through genetic testing and genetic counseling, I learned that my disease is recessive.  This was a huge relief, as it meant that my son has little to no risk of having retinitis pigmentosa.  I felt like a weight was lifted from my shoulders the moment that I heard this wonderful news.

In 2019, an opportunity to join the Foundation as an employee surfaced, and I was excited to be considered. I would have never believed that one day, I would join the team at the Foundation. After many tears of joy and gratitude, I embraced that reality and gift when I was offered the position of associate director of professional outreach. For over two years, I have been helping eye care professionals around the U.S. learn about all the wonderful resources available for individuals with an inherited retinal disease. 

My work with the Foundation has helped me accept my vision loss, while providing a tremendous amount of optimism for the future.  The research and clinical trials underway give me hope.  My dream is to see my son’s face clearly one day.  However, if my remaining vision is simply preserved, that would have a huge impact and I would be extremely grateful.  Thus, I will continue to move forward towards a future where there is a treatment, a cure, with my son by my side every step of the way.

Learn more about the Foundation's Open Access Genetic Testing Program here.