Learn About These Rare Eye Diseases to Honor Healthy Vision Month!

May is Healthy Vision Month!

Rare disease or not, maintaining healthy eye health should be a priority for all of us.

The National Institute of Health has resources for not only spreading the word about eye and vision health, but ways to actually address eye health. Some tips include:

  • Get in the habit of wearing sunglasses (even on cloudy days!)
  • Eat eye-healthy foods like carrots, dark leafy greens, and fish high in omega-3 fatty acids
  • Rest your eyes, using the 20–20–20 rule throughout the day: every 20 minutes, look away from the screens and focus about 20 feet in front of you for 20 seconds.

And that’s just some ideas!

Click here to learn more about ways you can address your eye health!

Rare Eye Diseases

In the spirit of advocating for rare diseases, we wanted to spotlight some rare eye diseases, so that more attention can be given to these often-overlooked or flat-out unknown rare eye conditions.

Retinitis Pigmentosa

Retinitis pigmentosa refers to a group of inherited diseases causing retinal degeneration. The retina is a thin piece of tissue lining the back of the eye. It converts light into electrical signals that the brain interprets as vision. 

People with retinitis pigmentosa experience a gradual decline in their vision, because photoreceptor cells in the retina degenerate.

Forms of retinitis pigmentosa and related diseases include Usher syndrome, Leber congenital amaurosis, and Bardet-Biedl syndrome, among others.

To learn more about retinitis pigmentosa, click here!

Stargardt Disease

Stargardt disease is an inherited disorder of the retina, the tissue in the back of the eye that senses light. The disease typically causes vision loss during childhood or adolescence, although in some cases vision loss may not be noticed until adulthood. It is rare for people with Stargardt to become completely blind; most people progressively lose vision to 20/200 or worse.

Stargardt disease is also called Stargardt macular dystrophy, juvenile macular degeneration, or fundus flavimaculatus.

To read more about Stargardt disease, click here!

Usher Syndrome

Usher syndrome is a condition characterized by partial or total progressive hearing and vision loss. 

The hearing loss is classified as sensorineural, which means that it is caused by abnormalities of the inner ear. The loss of vision is caused by retinitis pigmentosa. 

There are three types of Usher syndrome – which differ in symptoms and severity.

To learn about each of Usher syndrome’s different types and more about the disease itself, click here!


How are you supporting Healthy Vision Month? Share your stories, thoughts, and hopes with the Patient Worthy community!

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