“Stargardt disease, or fundus flavimaculatus, is an inherited form of juvenile macular degeneration that causes progressive vision loss usually to the point of legal blindness. The onset of symptoms usually appears between the ages of six and thirty years old (average of about 16–18 years). Several genes are associated with the disorder. Symptoms typically develop by twenty years of age, and include wavy vision, blind spots, blurriness, impaired color vision, and difficulty adapting to dim lighting.
The long-term prognosis for patients with Stargardt disease is widely variable although the majority of people will progress to legal blindness. Stargardt disease has no impact on general health and life expectancy is normal. Some patients are able to drive.”
From my Retina Specialist:
“If you enjoy reading books or driving, you should probably do a lot of it before you turn 50.”
Random takeaways from yesterday’s appointment:
– Stargardt disease requires inheriting one specific gene from each parent. Because of this it often/usually skips generations.
– The Dean McGee Eye Institute sees approximately 4 cases of Stargardt’s disease each year.
– Typically, Stargardt disease affects both eyes at the same rate. In my case, it hasn’t. The doctor called my case unique and referred to it as a rare form of a rare disease.
– Dean McGee has asked me to come back for more research so they can gather more information about this rare form of Stargardt’s.
– Stargardt disease is unrelated to Horner’s Syndrome (the reason I have different colored eyes). The fact that I have both is a coincidence, although it may explain why the Stargardt has affected my eyes at different rates.
– Stargardt only affects your central/focused vision, not your peripheral vision. That’s why it affects your ability to read or recognize people’s faces, but not your ability to maneuver a room, for example.
– The previous diagnosis of macular degeneration/atrophy is really just a product of Stargardt disease. None of the treatments (vitamins, shots, etc) will have any affect on my vision.
– While some research with stem cells is being done, there is no current treatment, prevention, or slowing down the progression of the disease.
– Legal blindness is defined as 20/200. The vision in my left eye is 20/1500. My right eye is currently 20/25.
– The doctor expects me to be legally blind within the next 10 years, give or take.