Blind and Visually Impaired Community
↑
3
↓
Is cone dystrophy always degenerative? Or can it be stationary. I’m 19 right now and my vision has been the same since I was born (born with cone dystrophy) (self.Blind)
submitted by [deleted]
[deleted]
Tarnagona 3 points 1y ago
If it’s mostly been stable your entire life, you might have achromatopsia instead, which presents similarly, but isn’t progressive. We never had working cones to begin with, rather than them working less well over time. But I don’t think this is something people on the internet can tell you. Best to ask your doctor, and maybe get genetic testing if you can (I haven’t yet, because I always forget to ask during eye appointments and only think of it later XD)
KillerLag 2 points 1y ago
Cone dystrophy isn't a single disease, it's the name for a group of diseases. Depending on which type you have (stationary vs progressive cone dystrophy), it can change. stationary generally doesn't change, while progressive does.
Keep in mind that even for individuals with the same disease, the symptoms and progression can be different.
Keep in mind that even for individuals with the same disease, the symptoms and progression can be different.
mmtheg 2 points 1y ago
Do you know if they can lead to complete blindness
KillerLag 2 points 1y ago
You should talk to your doctor about that, they would know your medical situation better. Have you had a genetic test done? Last I checked, there was about 30 genes or so associated with cone dystrophy, so knowing which mutation it is could be useful.
mmtheg 2 points 1y ago
I have tried to ask them but I tend to tip toe around the question because I’m really scared of knowing the truth espcially if it’s progressive :/. The most I got out of asking was for the doctor to tell me it’s stable. I don’t think she actually knew whether or not it was progressive since she sort of said she didnt
MC_Dubois 5 points 1y ago
Knowing is scary at first, but soon you realize how empowering knowledge can be. You can plan ahead, make lifestyle changes, adapt, and request appropriate services in a timely manner. With knowledge you are in control of your life but without it the illness controls you.
KillerLag 3 points 1y ago
Yes, it can be scary to know the truth. But not knowing only hurts you in the long run.
New medical treatments are coming out all the time, but if you don't know what specific condition you have, then you won't know what can help.
I'll give you a specific example. A client of mine had Leber congenital amaurosis, but didn't get genetic testing to figure out which type. A treatment for one very specific gene for that condition has come out, but because she didn't get a genetic test, she doesn't know if the treatment would work. She is still on the wait list for getting her genetic test, even though she could have gotten that genetic test years ago.
New medical treatments are coming out all the time, but if you don't know what specific condition you have, then you won't know what can help.
I'll give you a specific example. A client of mine had Leber congenital amaurosis, but didn't get genetic testing to figure out which type. A treatment for one very specific gene for that condition has come out, but because she didn't get a genetic test, she doesn't know if the treatment would work. She is still on the wait list for getting her genetic test, even though she could have gotten that genetic test years ago.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.