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Surviving and Thriving with Chronic Illness

EDS patients should not have LASIK! Ortho-K is a great option!

EDS patients are not candidates for surgical correction (such as LASIK) for myopia (near-sightedness), astigmatism or hyperopia (far-sightedness). Ortho-K is a great option and can even slow or halt the progression of near-sightedness in children. The patients wear a lens only at night-time and are free of contacts or glasses during the day. Yes, this is my hubby speaking on this video.smile It's awesome to have options, when we are often not candidates for surgeries as EDS patients.
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Where is this place, you ask? My hubby (who understands EDS and is an expert at ortho-K) is at http://www.TotalEyeCare.com. I can often be found lurking in my office at the back, researching like crazy! We have also used Total Eye Care as a great location for some of my “pre-clinical trials” and clinical trials. wink

Thanks for sharing this. Please could you explain why laser eye surgery is not a good idea. I had it done before I got diagnosed with HEDS so am understandably concerned what the problems might be?
Thanks a lot.

Hi Wattsy, Hopefully you’ll be just fine, but many of us end up with corneal ectasia (the cornea continues to bulge outward, increasing our prescription for myopia/astigmatism) and it just doesn’t seem to stop! One patient I know is now at -13.00 Diopters and still climbing. Yikes. She didn’t know she had EDS, and the doctors didn’t screen for it. :( Fingers crossed for you, my friend!

I purchased your wife’s e-book, “Your Eyes & EDS.” How do I get the FREE WORKSHEET from the e-book to show to my primary care doctor? I have multiple eye problems including Cogan’s dystrophy, very dry eyes, major floaters, mild cataracts, posterior vitreous detachment in one eye with bleeding, twice treated for infections, including once with a tear or hole in the white part of the eye that was considred for stitches. Every time I get new glasses they have to be remade as I can’t see well out of them. My eyesight fluctuates and I don’t have diabetes or (MS that was ruled out years ago, which I question). I have vitamin D deficiency and presently take 4,000 IUs. I also take lutein, zeaxanthin, and omega 3 for my eyes. I have the second pair of glasses right now and still don’t see that well. After using the internet sometimes I cannot focus my eyes. Hopefully with the WORKSHEET I can get someone to recognize the weak collagen and receive proper treatment.

Hi “Allergy”! To get the free worksheet, just follow the instructions in the e-book! It’s in the paragraph that mentions the worksheet and begins with “Receive a free informational worksheet…by…”. Easy-peasy! And I hope you enjoyed the book! I haven’t even announced it yet! Were you at the Dallas meeting where I gave it away to attendees, perhaps? I hope it is of great help to you! It sounds like you need a GOOD EYE DOCTOR! wink

I’m wondering if it is safe for EDS people to have cataracts removed? My eye doctor says I’ll be due in a bit and it may help my night vision (I’m only 62 but halos from headlights make it impossible for me to drive safely at night) but she doesn’t know if there would be complications healing. Any healing I require is very slow and I don’t have the ability to dissolve stitches, so what goes in must come out. Before I knew about EDS I used to wonder why my injuries just wouldn’t heal like everyone else.

Hi Catherine, Why don’t you see if your doctor can remove your cataracts without needing to put in stitches (commonly done now). I haven’t heard of any issues with us (beyond the usual potential complications—higher in the very near-sighted group). I betcha’ you’ll do just fine! wink

Thank you for your informative videos.  I was wondering if this is only suited for EDS?  I do not have EDS but because of Mast Cell Activation Disorder I don’t believe I would be a good candidate for lasik.  I desperately want to correct my vision because my glasses and contacts both trigger MCAD.  I understand you can’t give medical advice of course but thought I would ask if it is worth looking into in your opinion.  thanks

Hi Niki, I am shocked that glasses cause a mast cell reaction for you! I can’t help but wonder if something else is going on there, honestly. If you are not able to wear a contact lens at all, this may not be the procedure for you (patients wear the contacts at night-time when they sleep). If you can’t have refractive surgery, and you can’t wear glasses or contact lenses, we don’t have much to work with! wink Again, I wonder if a complete exam with appropriate ocular and systemic medications (and to figure out what’s up with your glasses) isn’t in order? wink

Hiya, Is OrhtoK an option for a 37 year old who has -5.25 corrected vision with prisms for horizontal double vision?

Hi, I may or may not have EDS. I went in for a Lasik/PRK consultation, and they told me that my eyes looked 100% healthy/perfect for Lasik…until I told them about my potential EDS. The doctor flipped out and told me to go to an expensive cornea specialist for a second opinion! But if my eyes looked fine during their testing, what else would another guy be able to tell them? And do you think that PRK would be okay, if not Lasik? Or that new ReLex procedure? Or Lasik/PRK with cross-linking? I know that you can’t give me a 100% do-or-don’t answer because everyone is different, but any guidance would be much appreciated!

Hi I am 44yrs old I have EDS Classical type I and have been wearing classes for nearsighted since I was 18yrs old and with astigmatism… my last Air Optix for Astigmatism contacts script form 1.5yrs ago was Left PWR -3.75 CYL -1.25 AXIS 180, Right PWR -4.00 CYL -.075 Axis 170 however I don’t think he got my script right I could not see well out of them ... so the video above states wearing contacts at night would that mean the ones you wear in daily wear contacts? or are these special sleep in contacts? is there a particular brand good for EDS Astigmatism eyes? My last pair of glasses were progressive bought from Sams club mistake they did not suggest or warn me the frame I selected did not have enough surface area from top to bottom to let progressive lenses work so from day one I have had to take off my progressive lenses to see up close I do NOT want to go through this again spend tons of money on a script that does not work for me, to top if off as a photographer I can’t see to take photos anymore with contacts cause I can’t see up close…. I don’t know what to do I need to see for distance and I need to see up close… I live in Michigan any eye specialists you can recommend in the area??? I live near Beaumont area both Troy/Royal Oak, Saint Johns?

My ophthalmologist is looking into Ortho-K for me, but would also like to know about its ramifications in mcas.  Glasses trigger ocular headaches due to weight…even with titanium; and contacts seem increase dry eyes during reaction and they need to have a rest from time to time. Zatidor helps with this and keeping mcas stable also helps to bring hea loo th back to normal.  Still, if you suffer with periodic dry eye and potential for autonomic neuropathy with mcas…that waxes and wanes (and what I believe causes the dry eye for me).... is there a contradiction against dry eye from mcas and ortho-k?

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Good morning, my 22 year old daughter has classic EDS and Lyme.  She was just diagnosed Friday with a thinning (lattice) of the retina at 10:30.  Her Dr. knew nothing about EDS.  My daughter read that it is best to do prophylactic treatment. What is your experience?  Thank you!

this is great, should further search on google

I recently had a burst of floaters—a new experience for me.  I immediately went to an optometrist who asked me to look to the edges of my visual field as she examined my eyes.  She did not see a tear but after the exam I began to have flashes, so she encouraged me to see a retinal specialist.  An ophthalmologist found a small peripheral tear and insisted she treat it with a laser, which, as I understand it, creates a ring of scars around the tear, with the scars sealing the tear.
I have hyper mobile joints (all Beighton signs positive) but no formal EDS diagnosis.  I am worried about zapping my retina with a laser to scar it—-thought this might lead to further injury and tears.
However, I am a bit nervous about this.  I also hesitate to get another eye exam soon as I am trying to let my eye rest so that the tear might heal on its own (the flashes, which began before I even stepped out of the seat after the exam, are rare now about 2 weeks later).
Given your extensive experience with EDS, how would you manage a small peripheral retinal tear? 
Thank you

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Dr. Dianna,
I have EDS and last year had a YAG treatment for correction of secondary cataract correction after cataract surgery years ago. The doctor said YAG might help with the light halos I saw at night. When it was performed the doctor dislocated my lens and through the process, the vitreous fluid came forward. I subsequently had corrective surgery to fix the dislocated IOL and remove the vitreous fluid. Do you know if people with EDS should avoid YAG treatments? Also, do you know if it is common for EDS patients to have an eye remain dilated for months after using Atrophine? Thanks for your help.

I was just checked by an ophthalmologist who found a thick capsular opacification. I do have hHEDS and MCAS. This doctor didn’t know if there was any affect of EDS on eyes. I am nervous to allow him to use a laser to correspond this. I also reacted to the preservatives in eye drops. I would appreciate your expert opinion in this matter.

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