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Rare Diseases and Your Vision

Posted on February 28th, 2018
rare diseases

Patients and their families around the world share their stories on Rare Disease Day to promote awareness of the challenges, hopes, and needs of those living with rare diseases. Here are some of the most uncommon inflictions that can affect your vision and how they are managed.



Recognizable as an elevated, wedge-shaped fleshy growth on your eyeball, pterygium or Surfer’s Eye is a disease that consists of a growth that starts on the layer protecting the white of your eye (the sclera) and can invade inward as far as the cornea. Pterygia are benign (non-cancerous) tumours, but can permanently disfigure your eye. They also can cause discomfort and blurry vision.


This eye disease gets the name Surfer’s Eye, because it is commonly found amongst people who spend long days in the sun, such as surfers, skiers, fishermen, and farmers. Anyone who spends time in UV-intense conditions near rivers, oceans, and mountains where rays are more harshly reflected is at risk. You prevent pterygium by protecting yourself from harmful UV rays.


Stargardt Disease

An inherited disorder of the retina, Stargardt Disease affects the tissue at the back of the eye that senses light. The disease typically causes vision loss during childhood or adolescence, although in some forms, vision loss may not be noticed until later in adulthood. Although complete blindness isn’t often an outcome, vision loss progresses slowly over time to 20/200 or worse.



Brain tumours can affect the eye and optic nerve. As it grows, depending on the location, it presses on the surrounding tissue and affects the function controlled by that part of the brain. Tumours that develop can compress optic pathway nerve fibre affect the functionality of your eyes. Sometimes, tumours can develop inside the eye, either in the middle and inner layers of the eye. Read more about various types such as uveal tract melanoma, retinal and optic nerve tumours, and eye lymphoma here.



The disease occurs in kinds younger than the age of five and may develop in one eye or in both eyes. In some cases the disease is inherited from a parent. Retinoblastoma is a serious, life-threatening disease. However, with early diagnosis and timely treatment, in most cases, a child’s eyesight and life can be saved.



Viral infections such as herpes simplex can lead to a rare eye condition called Iridocorneal Endothelial Syndrome. Most often affecting middle-aged women, it can lead to glaucoma. The syndrome almost always involves cells moving from the cornea to the iris. Those who suffer from ICE may experience pain or blurry vision in one eye or notice changes in the iris or pupil. An examination by an eye doctor will show if there are any changes in the iris, swelling of the cornea, or increased pressure in the eye.


For more information on vision health, make an appointment at your local FYidoctors clinic.