Surviving and Thriving with Chronic Illness

Booklet is here! Your Eyes and EDS

Dr. Diana's booklet is out! "Your Eyes and EDS: The Ocular Effects of Various Collagen Disorders". Great for you and your doctors! You can find it through Amazon, or click on the booklet on 100% of proceeds go towards current and upcoming treatment trials!
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Dr. Diana, Thanks for putting together such an informative booklet ! I am left with a question though… It sounds like antihistamines, decongestants and diuretics can make the Chronic Dry Eye situation worse yet I’m about to be on all three for various issues often seen in those with EDS.  How does one get around the predicament of using antihistamines as part of Mast Cell treatment but knowing it should be avoided for the Dry Eye issue?
I can buy Opticrom over the counter so I will add that to my daily regimen for the Dry Eyes.

Hello - So nice to see that someone out there recognizes that the eye may be connected to EDS.  I have had high myopia since birth, also very thin central corneas, and recently have been having difficulty finding an opthamologist who can deal with glaucoma, sinking optic nerves, cataracts and and IOP which keeps lowering (2-13 now) while the glaucoma seems to become worse.  It seems like my eyes are becoming more and more football shaped and the ganglion cells at the back of my eyes just seem to die quickly.  I was diagnosed with EDS in 2005 but all eye docs in this area (NYC-NJ) seem to not want to be bothered with EDS.  Any knowledge of an eye doc up this way who is capable of dealing with EDS and glaucoma together -  along with cataracts.  I am 79 so perhaps they feel I will die soon and the problem will be solved.  Unfortunately, the folks in my family live to be 96-97 years - all faculties in tact.  Any help, suggestions would be appreciated.  KEEP COOL   PAT

Is your Dysautonomia totally autoimmune?  I’m not sure of any of the causes of my Dysautonomia.  What tests are available to determine the primary cause?  My GP is very open and willing to help me.  He gave me an RX for Diamox and that really changed my life.  The odd thing is, I never had a migraine before the Dysautonomia struck in June 2011.  Prior to that I was mostly healthy.  I have had the coat hanger pain for years!  I wonder if the underlying cause might be caused by Streptococcus (ASO over 400)  or Cytomegalovirus. 
I’ve never been tested for EDS,  There is a geneticist a couple hundred miles away who is very familiar with EDS.  I haven’t decided if that should be my next step.  I was doing pretty well until I caught the flu and had a set-back!  Any advice would be much appreciated.  I’d love to learn more about your consulting program!  Very exciting!

I’ve had 3 retinal detachments.  One got messed up due to a bad doctor.

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