Ocular Manifestations and Eye Surgery Considerations in Patients with EDS and HSD - Dr. Doyle

[@elizabethl8407]

My 14 yo struggles with photophobia (along with she has blue sclera and her eyes are not equal horizontally across). I can definitely see she is most affected by fluorescent lights!

[@ashm676]

I have/ had these symptoms. Severe dry eye too. I have vision in one remaining eye. I paid €600 for a blood test to confirm I have kEDS type 6. If you can, I recommend testing and ruling this type out.

[@suki-yuki]

I have myopia, astigmatism since I was a kid. I have floaters, retinal holes, vitreous detachment, high risk for retinal detachments and 2 emergency lasers for the retinal holes. I was diagnosed with hEDS.

[@franzpeters3824]

I have myopia and astigmatism, too.

[@Truerealism747]

Do you have pain

[@VizzyInks]

I do, chronic eye pain

[@praxidike1023]

I have Hypermobile EDS and Keratoconus. Was diagnosed with Keratoconus almost 15+ yrs before the EDS diagnosis

[@mlapointej]

Do any other EDS patients out there have central heteracromia going on? Nearly everyone in my family with EDS also has central heterochromia.

[@minusthesparkle]

I do. Blue and gold. :) kiddo green and red.

[@OyVeyLala]

My dr!

[@pacificangel7]

I have cEDS and my severe light sensitivity, especially to fluorescent lights gives me migraines. I was tested and have severe Irlen Syndrome. It is a light processing disorder in the brain rather than the eye. My retinas and eyes are completely normal. Its a brain issue. Irlen syndrome runs in families, suggesting a genetic component, and is worsened by concussions. My guess is that upper cervical instability may be involved as it directly correlates with hypermobility and is worsened by concussions as well.

[@lindajohnson4676]

Thank you!

[@yinxuehui]

I had PRK back in 2001 and was told I was not eligible again because my cornea is now thin. This was 16 years before I got diagnosed. Same exact thing was told to my younger sister. I'm pretty sure we inherited myopia from dads side of family because he and 2 of his brothers also wear glasses and they ALL had PRK too before me and my sister did but they don't seem to have joint pain related to EDS.

[@elisabetheriksson8789]

I have high myopia (and EDS). In my pain rehab we were 3 EDS:ers out of 12 that had high myopia (over -10)

[@yinxuehui]

Just to make sure I heard right, he did say we can email him with questions before making a trip right?

[@Mikeantonacci]

Right

[@ashm676]

Is there a contact avenue for Dr Jefferson Doyle for EDS people abroad to ask questions? I can't see anything on the Wilmar eye institute webpage, pardon the pun.

[@mizuume648]

The point at 25:30 about convergence insufficiency - I've experienced this my whole life! I thought it was normal and that everybody has to choose one of the two views to focus on. Trying to achieve the same view with both eyes causes too much pain.

[@mizuume648]

I also have photobleaching. Yet another thing that I thought was normal!

[@andrewzakai3896]

instaBlaster...

[@ashm676]

I have kEDS type 6... Anyone out there with this?

[@sarahjames1806]

I've had issues with getting my eyes to focus near or close and was told that it's due to an issue with weakness in the muscles in my eyes.. is this an EDS thing? At the time I had perfect vision but it would go awful then perfect once my eyes would focus.. recently I was diagnosed with myopia aswell as having issues with eyes focusing and I also am extremely sensitive to light

[@Truerealism747]

I had it but anxiety was causing this with hypomobility now muscle pain issues

[@teresareinert8271]

Is that like when testing my eyes for drivers license I can’t keep both eyes open at the same time to read it. It’s one eye at a time and I can read them.

[@ellemeno0]

as someone with heds should I hesitate to try upneeq eye drops or should it be ok?

[@mlapointej]

As someone with EDS who is sensitive to many things, I would say you probably won't be able to tell until you try it. I know that I need to stick to purely just saline drops.

[@BlueBirdsSong]

I have Vascular EDS, my question is...I have had an almost full Retnal Detachment and also Macular problems. I have been left with continuous double vision. Also if I look at a persons face or an object parts of it will be missing and bot far and near sighted . I was told I have Lattes ( not sure of spelling), was told it meant I have a very high chance of this happening again. 2 Chiefs of Eye problems in hospitals didn’t find my Retnal detachment. Anyway , my question is am I going to lose my vision? Is that what is happening? I have shooting stars again, just like I had with my first Retnal Detachment. Glasses don’t help me at all. I am very scared. My Doctor won’t listen to me. I have constant Panic Attacks( even in my sleep) , and Anxiety. I am very light sensitive, I wear sunglasses on cloudy days, my eyes will hurt. But the weird thing is I have been noticing that I can’t get enough light when I’m trying to do something. I don’t understand this.

[@kennethklein6213]

I sure hope you found a more qualified doctor.

[@Truerealism747]

It could be the anxiety doing this

[@loristout157]

I had cataract surgery then the the lining behind my retinas tore. Just had Laser surgery to weld right eye to try and hold it together. I fear my retina will become completely detached. Double vision is coming back

[@ashm676]

I have kEDS and vision in one remaining eye and all the symptoms you described, except panic attacks. Yes I'm scared of going blind and the instant disability but I've met new blind friends, blind from birth, and they manage to live a full enough life regardless so I know I won't like it but I'll adapt.