Blind and Visually Impaired Community
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Cone dystrophy (self.Blind)
submitted by franks09
Good afternoon!! I was wondering how many of you guys have genetic linked cone dystrophy? And if anyone has found any support/resources.
viciousSnowFlake 3 points 2y ago
I have cone rod dystrophy. I too am interested in resources.
Otherwise_Computer79 1 points 1y ago
what were your first symptoms did you become myopic and did - lenses (glasses)help your distance vision....did you develop a bunch of floaters and see static ....please I need to know something weird os hoin on with me right now and no one can seem to figure it out and I am very disturbed
franks09 [OP] 1 points 2y ago
Have you had a genetics test done?
viciousSnowFlake 1 points 2y ago
Yup. Retinal specialist used it to help diagnose me.
ThisBlindChickReads 3 points 2y ago
I have cone/rod dystrophy ... My ophthalmologist has been extremely helpful and honestly, the best step to take is finding what gene/genes are mutated. I am in the U.S. and the cost can be very high for this unless you can be a part of a study. My ophthalmologist set this up for me. Foundation Fighting Blindness holds webinars with panels of scientists that discuss the breakthroughs that are being made in regards to genetic mutations that cause blindness. Being a part of these have been extremely beneficial for me in maintaining hope.
franks09 [OP] 2 points 2y ago
I’m part of a study. I can’t remember which atm. I have my genetics results at home. My brother and I both have this.
FrankyFourFingers4 1 points 6m ago
Hey buddy. Any updates on this?
franks09 [OP] 1 points 6m ago
Sadly not to much. I got my diagnosis two years ago now. But I can’t afford to have the tests done at u of m in Ann Arbor. Kellogg center. I’ve tried ssi/disability, nwo vision center. Ohio vision. I make to much money to get support
ThisBlindChickReads 1 points 2y ago
If your doc hasn't mentioned My Retina Tracker, that is a great resource as well. I am not sure if you need a doctor to set you up on it, but i believe access is available without a referral? It is a database that people with retinal diseases can enter their medical history, diagnosis, mutated gene info, etc. into which then gives doctors and scientists in the field better access to choose trial candidates from or alerts to breakthroughs. It is also a great place to upload your own supporting documents to for safekeeping. This is how I get alerted to webinars and articles that give more info that is specific to the gene mutations I have.
ThisBlindChickReads 1 points 2y ago
If your doc hasn't mentioned My Retina Tracker, that is a great resource as well. I am not sure if you need a doctor to set you up on it, but i believe access is available without a referral? It is a database that people with retinal diseases can enter their medical history, diagnosis, mutated gene info, etc. into which then gives doctors and scientists in the field better access to choose trial candidates from or alerts to breakthroughs. It is also a great place to upload your own supporting documents to for safekeeping. This is how I get alerted to webinars and articles that give more info that is specific to the gene mutations I have.
ThisBlindChickReads 1 points 2y ago
If your doc hasn't mentioned My Retina Tracker, that is a great resource as well. I am not sure if you need a doctor to set you up on it, but i believe access is available without a referral? It is a database that people with retinal diseases can enter their medical history, diagnosis, mutated gene info, etc. into which then gives doctors and scientists in the field better access to choose trial candidates from or alerts to breakthroughs. It is also a great place to upload your own supporting documents to for safekeeping. This is how I get alerted to webinars and articles that give more info that is specific to the gene mutations I have.
ThisBlindChickReads 1 points 2y ago
If your doc hasn't mentioned My Retina Tracker, that is a great resource as well. I am not sure if you need a doctor to set you up on it, but i believe access is available without a referral? It is a database that people with retinal diseases can enter their medical history, diagnosis, mutated gene info, etc. into which then gives doctors and scientists in the field better access to choose trial candidates from or alerts to breakthroughs. It is also a great place to upload your own supporting documents to for safekeeping. This is how I get alerted to webinars and articles that give more info that is specific to the gene mutations I have.
ThisBlindChickReads 1 points 2y ago
Finding the gene mutation is a huge first step. My doc set me up with "my retina tracker" or myretinatracker.com it is a huge database of people like us who have retina issues ... I don't think you need a doctor to start an account, I know I pretty much input all of my info on my own. But, it is used worldwide and gives stats on how many other users report the same inherited disease, which I find strangely comforting. It takes a while to set up and depending on the amount of vision you have, you may need help navigating, but it gives doctors and scientists more access to us. The set up includes tons of questions about your family medical history and how you came to your own diagnosis.
Since you have your genes and basic info, you may be contacted like I have been to sit in on webinars that give a ton of info.
Since you have your genes and basic info, you may be contacted like I have been to sit in on webinars that give a ton of info.
franks09 [OP] 1 points 2y ago
Rpgr is my gene and it was passed to me on my mother’s side. The cost is very expensive. I unfortunately don’t have health insurance and make to much money to be on Medicaid. I was denied by job and family services. Appointments and glasses are hard enough to pay for but the costs for the tests needed for this is wild lol. I was able to be in this study because my blood brother took the genetics test as well.
Cleeth 1 points 2y ago
I also have cone dystrophy. Happy to talk about whatever :)
Otherwise_Computer79 1 points 1y ago
what were your first symptoms and did u become myopic (nearsighted) and did glasses improve it even in the beginning
Cleeth 2 points 1y ago
Not really sure what my first symptoms were as it was discovered when I was 3-4. Apparently my dad took me to a zoo and I wasn't responding to the animals, which was the final clue that got me tested.
I'm very near sighted 6/18 corrected, >1/120 uncorrected (legally blind).
Beyond that I cannot see colours in a way that doesn't fit into the big three. I have a hyper sensitivity to light. And a visual fog. These all create relentless headaches.
A symptom I luckily did not get was decreased motor control of my eyes.
The glasses are mandatory. I can't function without them and have never been able to. My sight is deteriorating, but very slowly fortunately. It got a little easier to see when I got older since I was better able to respond to an opthalmologist's questions. This moved me from a 6/36 to the 6/18 I live with now.
I hope this answers your questions. I'll be happy to help further in anyway I can.
I'm very near sighted 6/18 corrected, >1/120 uncorrected (legally blind).
Beyond that I cannot see colours in a way that doesn't fit into the big three. I have a hyper sensitivity to light. And a visual fog. These all create relentless headaches.
A symptom I luckily did not get was decreased motor control of my eyes.
The glasses are mandatory. I can't function without them and have never been able to. My sight is deteriorating, but very slowly fortunately. It got a little easier to see when I got older since I was better able to respond to an opthalmologist's questions. This moved me from a 6/36 to the 6/18 I live with now.
I hope this answers your questions. I'll be happy to help further in anyway I can.
vik25 1 points 1y ago
I also have cone dystrophy and cleft palate,since you mentioned that you're eye sights are deteriorating i wanna know is there a possibility of complete blindness.(cause i can barely see now (24M) and in day light it feels like a 100 flashbang are going off in my eyes) and also is you're one eye more weak that the other.
Cleeth 1 points 1y ago
My thinking that 100% blindness (as in, no stimulus being processed, whatsoever. Or straight blackness) wont occur. But 100% disability is possible. Effectively total blindness yes.
And yes to the flash bang thing. Never put it that way but that's it.
My right is stronger than my left in terms of visual acuity. But otherwise it feels the same.
And yes to the flash bang thing. Never put it that way but that's it.
My right is stronger than my left in terms of visual acuity. But otherwise it feels the same.
Vwave 1 points 2y ago
I do and I have not, feel free to DM me
franks09 [OP] 1 points 2y ago
Dming
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