Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
I was only diagnosed last month but for the last two years the "floaty bits" in my eyes (which I remember as a child) have got so bad it interferes with reading etc.
My optician says everyone gets floaty bits, we see them if we look at something plain white, but they don't interfere with normal sight.
I told her it did interfere with my vision and I also get slight cloudiness coming and going in each eye so when reading I sometimes seem to use only one eye or the other while the other one sorts itself out.
She repeated that floaty bits are normal and I'm in my 40s now so will need glasses at some stage.
My mother has glaucoma so she checks for that, but the EDS is in my father's family so is separate.
What should I tell her at my annual appointment, due this month?
I am worried about it.
My optician says everyone gets floaty bits, we see them if we look at something plain white, but they don't interfere with normal sight.
I told her it did interfere with my vision and I also get slight cloudiness coming and going in each eye so when reading I sometimes seem to use only one eye or the other while the other one sorts itself out.
She repeated that floaty bits are normal and I'm in my 40s now so will need glasses at some stage.
My mother has glaucoma so she checks for that, but the EDS is in my father's family so is separate.
What should I tell her at my annual appointment, due this month?
I am worried about it.
Show this to the doctor:
http://www.dog.org/1999/e-abstract99/505.html
https://www.rareconnect.org/en/community/ehlers-danlos-syndrome/article/your-eyes-and-eds-lecture-series