Blind and Visually Impaired Community
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Anyone with basal laminar drusen? (self.Blind)
submitted by vdaddy42069
Hi guys,
I am a 29 year old healthy man who was diagnosed with Basal Laminar Drusen about 3 months ago. Prior to the diagnosis I have had no vision problems. The Drusen was discovered after a simple eye exam ( I needed glasses, vision was 20/40 in right eye 20/50 in left).
After visiting with an Retinal Specialist (Retina associates of Cleveland), he described the Drusen as cuticular ( which has many synonymous terms like BLD). Without going into detail ( I can if you think it will help) the doctor essentially said that since it’s not affecting my vision now, there’s an 80% chance it never will. I took that and ran with it ( can you blame me ;) ) for the past few months, but with the development of a floater in my right eye (unrelated according to doc)a few weeks ago, I started researching more into in Basal Laminar Drusen to get a better understanding of it.
From what I’ve found, I’m not sure what to make of it. Some encouraging news that coincides with the doctors projection & other news that makes it seem like I’m mostly likely going to lose my vision. I have stopped smoking, (a possible cause of BLD some say) and switched to vaping (has to be slightly better, right?). I have also started taking a vitamin similar to AREDS.
Does anyone here have any insight into life/prognosis/outlook of life with BLD? Should I take the 80% and run with it? Should I seek a second opinion? I have a follow up in 3 months.
My biggest fear is starting a life and family and having that taken away.
Thanks!
I am a 29 year old healthy man who was diagnosed with Basal Laminar Drusen about 3 months ago. Prior to the diagnosis I have had no vision problems. The Drusen was discovered after a simple eye exam ( I needed glasses, vision was 20/40 in right eye 20/50 in left).
After visiting with an Retinal Specialist (Retina associates of Cleveland), he described the Drusen as cuticular ( which has many synonymous terms like BLD). Without going into detail ( I can if you think it will help) the doctor essentially said that since it’s not affecting my vision now, there’s an 80% chance it never will. I took that and ran with it ( can you blame me ;) ) for the past few months, but with the development of a floater in my right eye (unrelated according to doc)a few weeks ago, I started researching more into in Basal Laminar Drusen to get a better understanding of it.
From what I’ve found, I’m not sure what to make of it. Some encouraging news that coincides with the doctors projection & other news that makes it seem like I’m mostly likely going to lose my vision. I have stopped smoking, (a possible cause of BLD some say) and switched to vaping (has to be slightly better, right?). I have also started taking a vitamin similar to AREDS.
Does anyone here have any insight into life/prognosis/outlook of life with BLD? Should I take the 80% and run with it? Should I seek a second opinion? I have a follow up in 3 months.
My biggest fear is starting a life and family and having that taken away.
Thanks!
KillerLag 1 points 3y ago
Losing your vision does not necessarily mean you will lose your family. There is no question that losing vision is hard. However, there is rehabilitation training to learn how to do things again.
That condition is fairly rare, I think it has only come up once before in the 10 years I worked in the field. However, it shares many similarities with age-related macular degeneration.
Vaping is unlikely to be better than smoking, but there isn't enough research into that. Current research does indicate that both smoking and vaping cause health issues, though. something to talk to your doctor about.
You mentioned 80% chance of nothing happening. If it is the study that I recall correctly, the statistic is 22% ended up with visual accuity as bad as 20/100. I should mention that 20/100 doesn't qualify as legal blindness, and still retains a fair bit of vision. You may need to use larger print and magnifiers, but you'll likely still be able to recognize people and objects.
(Here is the link for that stat https://eyewiki.aao.org/Basal_Laminar_Drusen#Prognosis)
That being said, if you want to get more information, you should consider a second opinion. I don't know how good your retinal specialist is, but you can check with others if it helps.
That condition is fairly rare, I think it has only come up once before in the 10 years I worked in the field. However, it shares many similarities with age-related macular degeneration.
Vaping is unlikely to be better than smoking, but there isn't enough research into that. Current research does indicate that both smoking and vaping cause health issues, though. something to talk to your doctor about.
You mentioned 80% chance of nothing happening. If it is the study that I recall correctly, the statistic is 22% ended up with visual accuity as bad as 20/100. I should mention that 20/100 doesn't qualify as legal blindness, and still retains a fair bit of vision. You may need to use larger print and magnifiers, but you'll likely still be able to recognize people and objects.
(Here is the link for that stat https://eyewiki.aao.org/Basal_Laminar_Drusen#Prognosis)
That being said, if you want to get more information, you should consider a second opinion. I don't know how good your retinal specialist is, but you can check with others if it helps.
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