I have Best Disease. Its a form of macular degeneration.
My case is very advanced for my age. My optometrist's 90 year old grandmother actually has it too, but then when we did the eye exam she had to awkwardly tell me that my 24 year old eyes are almost twice as bad.
I also find it funny having the same conversation with everyone when they find out what my disease is named haha.

Doyne honeycomb retinal dystrophy. (Aka doyne choroiditis, aka malattia levantinese)

In very basic terms It's a kind of macular degeneration that follows a specific honeycomb pattern. It also manifests earlier. I was diagnosed at 32.

It has gone through the maternal line of my family like a hot knife through butter.

I tried finding data regarding how common it is but it's so rare that there is none. Funnily enough, the area I live in (which had a relatively large number of levantine settlers once upon a time) is generally considered one of the global hotspots for it, so even though it is very rare, all of the opticians in the area are well aware of it and some of the world's foremost experts work out of the hospitals in the surrounding cities.

May I ask why you’re asking?

Born with morning glory syndrome. Basically a detached optic nerve. Totally blind in my right eye since birth with about 20/110 in the other eye (it can be corrected). Husband's condition is so rare there's no name or understanding of it. He's had it since birth and is almost totally blind.

Stargardts disease. It's a double recessive gene. Effects only about 1 in 100,000 people. Both myself and my brother have it. That's 2 cases in one family. I don't have the exact percentages on that but rare would be an understatement.

Homonymous Hemianopia…

Retinitis pigmentosa (RP) associated with Usher Syndrome. RP is degenerative (slowly on my case) and characterized by loss of peripheral vision and poor night vision. Usher Syndrome is entails RP and hearing loss.

microphthalmia, a very rare birth defect where my eyes didn’t fully develop, so they’re about 1/3 the size they should be. Went blind from secondary glaucoma, because I still produce normal amount of eye fluid, leading to very high pressure.

Stickler syndrome (type 1) - weakens the retinas, more prone to tears and detachments. Had multiple surgeries in both eyes to repair previous issues - almost 30 y/o

FEVR (Familial exudative vitreoretinopathy). It's a rare genetic condition where the blood vessels in the retina don't grow normally, and there are all kinds of associated issues.... leaking vessels, retinal folds/detachments, etc. It's very similar to ROP except it's genetic and not caused by prematurity. I lost vision in one eye when I was little, and growing up had low vision in the other. I still have a bit of vision in my seeing eye but it is extremely poor.

I'm 32 and I've had close to 30 surgeries on my eyes at this point.

I have aniridia. Aniridia is a serious and rare genetic eye disorder that affects the colored part of the eye (iris). Aniridia means lack of an iris. With this condition, the iris is partly or fully gone. The pupil is abnormally large and may be oddly shaped (from Google).
My eyes are dilated all the time. So light sensitivity is the biggest problem I have. To sudden of light or to bright of a light actually causes me some pain.
I was born with it in both eyes. But also have a major problem with nystagmus. Especially if I try to stare at something for more than a literal second.

Retinopathy of prematurity - born completely blind in left eye, and had 6/36 or...20/180 (I think?) in right eye until 2020. Had a retina detachment fixed in 2020, but my cornea is now fucked and rejection is too high a risk so I consider myself blind. I also had acute angle glaucoma in my right eye due to the ROP, but don't seem to have it anymore due to having no lens (natural or fake).

Proliferative Vitreopathic Retinopathy. Cost me an eye. Typically affects those 70+, I am in my 40s.

Idk I was just diagnosed today with PPMD. It's not rare but I'd share

I saw lines that looked like scratches in my left eye and dots on the right. They're basically cysts but they don't impact vision. It's very rare to progress to me needing cornea transplant.

Was really afraid.

Does it count when they don’t know what’s going on? 😂 Jokes aside, I have moderate ROP (Retinopathy of prematurity), anatomical abnormalities. My vision is like looking through a camera that only stays out of focus with a film of static covering my vision 24/7. Doesn’t help I was already born with shitty vision

My son has dominant optic atrophy caused by the Opa1 gene. I’d like to hear from anyone who also has this gene.

Idiopathic degenerative keratitis. Given the unknown cause of sudden bursts of keratitis, a corneal transplant is expected to have let's just say not ideal risk of rejection. I've seen most corneal specialists since age 7. No genetic or environmental cause. I'm a total anomaly.

Double coloboma, one coloboma is 1 in 10000 births so double is much more rare

I follow this sub because my husband (who is not on Reddit) has PIC (punctate inner choroidopathy) and blind spots in both eyes.

My brother and I have Cone dystrophy

LCA. Read about it here: https://en.wikipedia.org/wiki/Leber_congenital_amaurosis

Lattice degeneration (and myopia but that isn’t rare)

https://eyewiki.aao.org/Lattice\_Degeneration

Not rare but possibly a rare combination of things together. Optic nerve atrophy that the doctors believe caused nystagmus and bitemporal hemianopia.

So basically my central vision can only be corrected to around 20/60 and is around 20/80 to 20/100 uncorrected depending on the kind of day I’m having when it’s tested. I’ve also never had full peripheral vision - I’m missing the left half in my left eye and the right half in my right eye. Add all the issues with depth perception, reading issues, spatial awareness and night vision and it’s a really annoying combination.

Multifocal choroditious MFC for short, plus PIC and now AZOOR. Started as pic in my left eye, got CNV a bleed in my left eye which damaged a lot of my vision. Its now in my right eye and is running away like a freight train. I've basically got no vision in my left eye and my right eye is going along the same way. The drugs aren't working and its been 2yrs and my eyesight has dramatically reduced no peripheral vision thanks to azoor and very light sensitive. The future is looking pretty damn bleak to be honest. I loved to paint but now everything is just a blur I loved to hike but I'm a fall danger now (already had a nasty injury due to not seeing a step) trying my hardest to stay positive but work is getting near impossible and I work in hospitality so I'm not even sure what I could do if I can't work in that field as I can't see a computer screen and I'm not really trained in those fields as it is.

I was diagnosed with Acute Macular Neuroretinopathy nearly 10 years ago. I was told back then that there were only sixty-seventy cases worldwide. Ever since then, I get a 1-2 messages a year from people who are newly diagnosed.

I have it in both eyes so I have paracentral scotomas/blind spots in my central vision so I can’t drive and I use accessibility settings on my phone and computer to read. I also get near-constant flashing lights in my peripheral vision. The eye problems have also worsened my migraines, which I was diagnosed with in 2004. Since the AMNR showed up, my migraines have become chronic. My medications have helped with a good majority of pain, but I still have the blind spots and constant auras messing with my vision.

onh