Surviving and Thriving with Chronic Illness

Your eyes and EDS - What is truth, what is myth?

Dr. Diana focuses on the ocular truths and myths related to collagen disorders, such as EDS (Ehlers-Danlos syndrome). Are we more prone to glaucoma or macular degeneration? What is up with this Dry Eye Syndrome? Are we candidates for LASIK? These questions and more are discussed, along with announcements about current and upcoming research and medication.
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Hello Mrs. Diana;
I used to have better than 20/20, something like 20/40 or 40/20??? But my eyesight has significantly gotten really bad lately so I had my eyes examined which included dilating my eyes for the first time. The doctor said I have 20/20 vision! I asked him why was it that I couldn’t see and he said it’s from severe irritation and inflammation from Dry Eye! But I don’t think that’s the only reason because even when my eyes feel fine, I still can’t see… Is there another test for maybe other issues? Oh and the eye moisturizing drops he gave me make my vision worse like I’m looking through raw egg whites. grin

My eyes are getting worse.  I do not know if this is just age or EDS related. How do you differentiate?  Also, Amazon does not have the Driscoll Theory as it is out of print.  I do not see this in your store.  How does one get a copy?  Can you have the publisher add it to Kindle please?  Great work!  Thank you…

Very informative. I did not realize how much collagen is in the eyes.  Again, please use correct medical terminology.  EDS can be hyper mobile, classic, and or vascular.  Thank you…

Hey there! I was watching the “Your Eyes and EDS” video. My eye doctor says I have preglaucoma since birth with constant pressures at 14 I think it was. I was diagnosed with EDS too. I get punctual plugs for dryness too. Would love to join your group of friends!

Really interesting to hear about possible affects of EDS on our eyes. I was diagnosed with EDS type 3 in dec 2013, but i may 2013 I had LASIK surgery. Recently I have had increasing problems with blurred vision in my right eye, and it’s now affecting my vision. My brother has keratoconus and recently had surgery but was not diagnosed with EDS when he saw an EDS consultant. Im wondering if my EDS could have affected the effectiveness of the LASIK and may deteriorate further

I’ve had 5 PRK procedures; 3 on left eye on 2 on right.  The first were done in January 1996 when it was first approved.  Of course they didn’t know at the time to measure the cornea thickness.  Anyway, I’m just discovering that I have EDS/POTS/Mast Cell Activation Disorder and I have extremely dry eyes.  I was using Restasis but have learned that due to being homozygous for MTHFR A1298C that I shouldn’t take cyclosporin because my body can’t handle it.  I already have the plugs (one worked itself out a few years ago) but my doc said there is really no difference between my eyes (1 with the plug, 1 without) so the plugs aren’t helping. My tear ducts are clogged so I use a heat mask at night and some Lotemax drops.  Is there anything else I can do?  I can’t wear contacts for more than a few minutes.  They’ve talked about manually expressing the tear ducts but the price ranges from $600 - $1800.  Yikes!  I ordered some eyedrops with eyebright in them and I use helichrysum and Frankincense oil on the bones around the eyes since several people have mentioned their vision improved after doing so for 6-12 months on a daily basis.  My dry eyes are terrible!

I love that you did this video - I feel like it should be a teaching tool for some eye doctors who for some reason, seem to have no knowledge of EDS or it’s effects on the eyes.

What a frustrating thing it is, to live with EDS—if for nothing else, the constant need to school our own medical professionals about EDS so they can hopefully treat us properly. Ugh.

Can Esophoria be related to EDS? My thirteen year old daughter has this issue with her vision and has just been diagnosed with EDS.

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This video gives you the answer regarding your eyes and EDS. Watching this video, you can easily understand what truth is and what myth is. So you should watch this video and clarify your doubts if you have any. dish network

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After 59 years of weird medical “stuff”, I have a diagnosis of EDS. I am relieved that there is now a name and explanation for me but concerned for my kids and grandkids. My 31 year old daughter has many symptoms and even the extra rib.  Other four kids have things that point to EDS as well. My sister was diagnosed years ago.  The puzzling thing is that my 31 y/o daughter has been diagnosed with retinitis pigmentosa and is now blind. It’s no where to be found in our families but plenty if EDS is.  I can’t help wondering if her blindness falls on some part if the genetic spectrum as EDS. Where can turn to even ask this question.  Anyone else out there with an RP diagnosis?

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