Stargardt disease
DiseaseWikipedia
44
MENTIONS
16
EPISODES
11
PODCASTS
Search complete. 44 mentions across 16 episodes found for "Stargardt disease".
Sep 30, 2026
speaker_7SOUNDBITE_SPEAKER
I had perfect vision, uh, up till 2010.
speaker_7SOUNDBITE_SPEAKER
Then I was diagnosed with Stargardt.
speaker_7SOUNDBITE_SPEAKER
Within four years, I was legally blind.
speaker_8SOUNDBITE_SPEAKER
Every time we'd see the ophthalmologist, he'd say, "No, there's, there's treatment coming.
speaker_9SOUNDBITE_SPEAKER
We're gonna take you inside now.
speaker_7SOUNDBITE_SPEAKER
Okay.
Ryan TanakaHOST
Blind Stargardt patient reads letter again in PRIMA by Science Clinical Trial.
speaker_9SOUNDBITE_SPEAKER
You've had your implantation.
Ryan JolleyGUEST
So I was about 10 years old.
Ryan JolleyGUEST
You know, I have a rare genetic disease called Stargardt's and had normal vision up to that point.
Ryan JolleyGUEST
It was, you know, I played baseball and basketball and those sorts of things.
Ryan JolleyGUEST
And so fourth, fifth grade is when I lost my vision.
Joe BrennanGUEST
And we work very closely with the agencies here and the, and the great organizations like Retina UK.
Joe BrennanGUEST
Avant Guard is developing two gene therapy products, uh, for Usher syndrome type 1B and for Stargardt disease.
KateHOST
Great.
KateHOST
Andy?
Ben ShabermanGUEST
I'm a patient advocacy consultant for Alcius.
Ben ShabermanGUEST
We're a biotech in Boston, Massachusetts, in the US of course.
Ben ShabermanGUEST
And we have a modified form of vitamin A, it's a small molecule, for Stargardt disease.
Ben ShabermanGUEST
And in Stargardt disease, you lose central vision, as those of you affected may know.
Bhavna TaylorGUEST
Uh, my background is teaching.
Bhavna TaylorGUEST
I'm a qualified teacher, but I've s- given that up and I'm now a co-founder and CEO of a charity called Stargardts Connected after my son was diagnosed, where we aim to kind of raise awareness of the condition, 'cause it's rare.
Bhavna TaylorGUEST
Also support the community and, um, help to support, um, and fund research into the condition.
Paula McGrathHOST
Thank you.
Bhavna TaylorGUEST
I mean, we were referred actually to a local sight loss hospit- no, local hospital.
Bhavna TaylorGUEST
But I just, for me, I wanted to get seen quite quickly, and I remember doing a referral to our, our local sort of specialist eye hospital, which was Moorfields.
Bhavna TaylorGUEST
And with s- imaging and eventually genetic testing, he was confirmed with Stargardts.
Paula McGrathHOST
Okay.
Ellie DowdyPANELIST
I'm currently studying a level three in computer science.
Ellie DowdyPANELIST
I was diagnosed with Stargardt's in 2022 at the age of 15.
Ellie DowdyPANELIST
This made for a very difficult, this made for a dif- very difficult time as I was preparing to sit my GCSE exams.
Ellie DowdyPANELIST
So juggling the diagnosis and studies was difficult.
Ellie DowdyGUEST
I'm 19 years old and currently studying a level three in computer science.
Ellie DowdyGUEST
I was diagnosed with Stargardt's in 2022, just before I sat my GCSE exams.
Ellie DowdyGUEST
This made for a very difficult time trying to navigate education and a sight loss diagnosis.
Denise RawdenHOST
Thanks, Ellie.
ChrisHOST
And then he says about this horrible illness he's got where...
ChrisHOST
it started with a little dot, Stargardt disease, and now it's like really blue.
ChrisHOST
Peripheral vision's fine, but directly in front of you, you can't see anything.
ChrisHOST
And honestly, Dave, what a lovely lad James is like.
Narelle WrightHOST
Like
Catharina Williams-van KlinkenGUEST
I'd hear my older sister who also has Stargardt's, she'd be using voiceover and I'd think, oh, it just talks incessantly.
Narelle WrightHOST
And a
Catharina Williams-van KlinkenGUEST
few times I'd accidentally started voiceover and I couldn't stop it and I was just really afraid of it.
speaker_8GUEST
So we can enhance the vision that you still have.
speaker_8GUEST
eSight was developed by an engineer in Ottawa, Canada, who had two sisters who had Stargardts, and that's the reason that he developed it, and that was 15 years ago.
speaker_8GUEST
eSight Go is the latest version, and that's the fifth version of eSight.
speaker_8GUEST
It's much more glasses-like.
JosephGUEST
So lots of people will ask us, hey, I have glaucoma.
JosephGUEST
I have Stargardt's.
JosephGUEST
I have macular degeneration.
JosephGUEST
I have juvenile retinaschesis.
6 more episodes mention Stargardt disease.
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