Reboosh | ♥ Nonprofit | Bring Your Karma

Bring your karma
Join the waitlist today

HUMBLECAT.ORG

Blind and Visually Impaired Community

r/blind

Full History - 2021 - 02 - 01 - ID#lam8dx

↑

↓

Hey guys! Check out my new video on Lebers Congenital amaurosis. Anyone else on here have LCA? Would love to connect! (self.Blind)

submitted by Aespi152

https://youtu.be/97PDoLtnqAM

JackEsq 3 points 2y ago

My daughter, who is 5, has LCA. I volunteer with an organization, $1 which is for people with LCA and their families to connect.

Aespi152 [OP] 1 points 2y ago

Aw wow thanks so much for the info! I will definitely check them out!

UnsightlyNewYorker 1 points 1y ago

I was diagnosed with both RP and LCA, it proabably because I have the RPE65 gene mutation which causes both RP and LCA
I was treated by Dr. Albert Maguire with Luxturna with some minor improvement

divgirlarb 1 points 2y ago

I've LCA as well. I'm 22, just graduated from university as well :)

Aespi152 [OP] 1 points 2y ago

No way! Feel free to subscribe to my channel! Would love to stay in touch with you :) and congrats on graduating!

divgirlarb 2 points 2y ago

Oh, I already did subscribe and I'm binge-watching your videos :) . thank you for making those videos. Finally, someone that I can relate to xx

Aespi152 [OP] 1 points 2y ago

Aww thank you! And yes, its great to connect with people that are experiencing the same thing :
)

spmealin 1 points 2y ago

LCA type 6 here, nice video!

Aespi152 [OP] 1 points 2y ago

Thank you!

spmealin 1 points 2y ago

Also, I just took a glance through your other videos, congratulations on graduating. I'm in the same boat as you, I never thought I would be finishing my degree in the middle of a global pandemic. At least it is done though. :)

[deleted] 1 points 2y ago

[deleted]

blind_cowboy 1 points 2y ago

For what it’s worth, neither was I. I did some research as did my nephrologist at the time, and we realized at about the same time that that was probably the issue.

If I may ask, how old were you when you experienced kidney failure? I was 31 when I ended up in the ER wondering what the hell was wrong with me, but learning the symptoms, I could see it starting when I was in high school. I ask because, from what I’ve read, most people are still a child or teen when it happens to them.

[deleted] 1 points 2y ago

[deleted]

blind_cowboy 1 points 2y ago

It’s only I think 3 of the mutations that corilate with kidney failure if I remember right, and it’s not widely known. I think it was in the early 2000s when they discovered it. I was born in 83, researched for anything new regularly, and didn’t learn about it until 2014.

Aespi152 [OP] 1 points 2y ago

Wow sorry to hear that :( yeah i had no idea it was a symptom either

blind_cowboy 1 points 2y ago

Yep. I’ve got it, kidney failure and all. The most vision I ever had was light perception. That stayed the same from childhood until my mid-20s and then rapidly disappeared.

wishiwasmegmccaffrey 1 points 2y ago

My friend has LCA if I’m remembering correctly. She calls it just “Lebers”and I guess they are the same thing.

AnElusiveDreamer 1 points 2y ago

I have LCA. For a while, they thought I had RP until they did DNA testing. I will check out your video when I get the chance.

Aespi152 [OP] 2 points 2y ago

No way! I feel like its such a rare disease its hard to find people who can relate.

AnElusiveDreamer 1 points 2y ago

Yes, it is. I miss when I thought I had RP because I think it’s more common. They are actually pretty similar, I think.

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.