I’ve had this since early childhood – as long as I can remember. It’s getting worse with age. (I’m 46.)
It wasn’t until my 20s when I realized it wasn’t normal. Then the eye doctors I asked had no clue what I was talking about. Only yesterday did I find a name for it. Here I had begun to believe I was the ONLY one — so glad there are others!
There doesn’t seem to be a cure at this time, or even much in the way of research. I have read there seems to be a connection with auto-immune disorders, particularly Lupus. I have several symptoms of Lupus including butterfly rash and positive ANA, but it doesn’t seem doctors want to diagnose it without kidney damage. (Which makes no sense to me.)
Have you had much bloodwork done on your daughter?