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As Im sure everyone does, I am feeling like a rare breed. I was wondering if anyone else has hypoplasia with constant pressures and myopia like I do while having EDS as well. Anyone?
Also I read somewhere that (edited here) optic nerve hypoplasia can many times come with under developed pituitary too?
Do you mean optic nerve hypoplasia or brain hypoplasia or some other type?
Hard to believe we can have multiple rare conditions, but we do. The faulty collagen is everywhere 🙁
Ok serious brain fog I cant believe I did that! Optic nerve hypoplasia please. I knew hypoplasia just means underdevelopment of tissue or organ. My mind thought I put in the specific area. Look at that. Wow. Sorry.
Interesting question, Amanda! Can I assume your hypoplasia is bilateral (both eyes), or is it just one eye? My answer depends upon your answer! 😉
Yes, mine is both eyes with preglaucoma pressures of constant 14. She says it is since birth. I had glasses by age 11 with myopia and astigmatism in both eyes as well.
Then, yes! Pituitary problems often can be associated with optic nerve hypoplasia. Honestly, you are the first EDS patient I’ve heard of with this, so it will be interesting to hear if others are being diagnosed. 😉
I have a lot of questions in that case. Is it rare to be found in both eyes like me? Do you think (I kinda do now) that the optic nerves and EDS issues are separate things? Are you able to point me in a good direction on info about this and maybe why I was born this way (or why they stopped growing when I was a child). I wonder if it will make me go blind.
Honestly, the best place to get information on this is likely the doctor who diagnosed you. This doctor is in the best position to understand your individual case. Dr’s “Wiki” and “Google” are always second best. 😉
Yes, she is highly intelligent. I do wonder if there is more information out there that she isn’t aware of. Her response as to why I have bilateral optic nerve hypoplasia is the same as my other issues, “some people are just born that way.” She says that I am not blind as long as I can be corrected with glasses. Not much input on my prognosis. Thankfully my pressures stay the same so she thinks it is unnecessary to treat me for glaucoma at this point. My pressures are low enough to call it preglaucoma instead of full blown glaucoma. I find it interesting how I have blind spots in both eyes in the same place that I can not see a blank image area, or loss of vision area for better wording, while I see with them.
Dr. Google:
“Although optic nerve hypoplasia has been associated with maternal diabetes, maternal alcohol and drug abuse, maternal use of anti-epileptic drugs, and young maternal age (20 years of age or less), most cases of ONH have no clearly identifiable cause.”With 100% certainty I can say that all reasons listed do not apply in my case. I guess the, “no clearly identifiable cause” does of course haha!
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