Outreach to researchers

Below is our group initiative, with heartfelt pleas for MMD awareness and research, along with personal experience of several patients across the globe suffering from myopic macular degeneration (MMD).

Open Letter to Researchers

To Researchers around the world,

We are a group of patients and patient advocates with Myopic Macular Degeneration from all over the world. Even though MMD patients face devastating and progressive vision loss, the disease continues to be often underdiagnosed, misdiagnosed, not categorised correctly or aggregated with other macular conditions.

The two MMD subtypes are dry atrophy, accounting for about 90%, and wet degeneration or myopic CNV, accounting for the remaining 10%. The current anti-VEGF injections that were originally developed for AMD are also effective for myopic CNV. Nevertheless, atrophy is a common end point for both MMD subtypes.

RPE cells die from retinal stretching and thinning, followed by photoreceptor death and central vision loss. The visual impact is similar to geographic atrophy in AMD, but, sadly, happens to young adults as early as their 20s and 30s. Women are twice as likely to be affected.

In 2020, there were approximately 400 million high myopes worldwide (5.2% of global population), and an estimated about 40 million MMD cases worldwide. Currently in the USA alone, there are 10 million high myopes (refractive error of - 6 D and higher) and 820,000 of them suffer from MMD. In Japan, MMD alone has been found to cause 12.2% of visual impairments (approx 200,000 people).

In spite of efforts to control myopia progression in children, the prevalence of high myopia is increasing extremely fast around the world. By 2050, it is estimated that there will be 1 billion high myopes in the world, and at least 10% of them (100 million) will develop MMD.

MMD is far more prevalent, but not as well-known as Stargardt’s disease, a form of early onset macular degeneration that has been extensively researched and is advancing rapidly towards cure. In 2020, Stargardt’s disease affected approximately 800,000 patients globally (compared to 40 million MMD patients globally).

We are very enthusiastic about your pioneering work on RPE replacement for AMD. RPE replacement in MMD could vastly improve the vision of millions of us younger patients around the world, for many decades of our lives. Please consider your research and treatments for MMD as well. It is possible that the treatments in development for AMD (currently around 196 million AMD cases worldwide) could be leveraged or modified for MMD as both diseases share the path of loss of RPE cells followed by photoreceptor death.

Attached to this email are letters from several patients who would like to share their personal stories with you with urgent pleas for your research. Awareness of the disease and treatments for MMD management are desperately needed. They could drastically reduce the number of people progressing to visual impairment and blindness.

If you need any information from MMD patients, please feel free to email us at myopicmaculardegeneration@gmail.com. We are available to answer surveys or questions, participate in trials, and would be happy to get in touch and assist you in any way we can.

Please don't hesitate to share the attached PDF packet containing the letter & our stories with your colleagues, officers, scientific advisers and shareholders.

We sincerely thank you for your work and dedication to improving the lives of patients with visual loss.

The Myopic Macular Degeneration Patient Group