What is your diagnosis (or diagnoses if you have more than one)?
BPES, progressive cornea disease, severe dry eye
How long have you had it?
I've had BPES all of my life and think that it caused the other 2 conditions.
What do you wish more people understood about dry eye (or eye pain if that's your main issue) and how it affects people's lives?
I wish people knew that dry eye symptoms are variable but include devastating pain and lack of vision which affects quality of life to the point where one cannot even care for oneself alone any more.
What has helped you the most?
The one thing that helped me the most was scleral lenses. An eye doctor put a trial scleral lense into my eye which felt like a monocle, but my vision, including depth perception, improved so much that I could go down stairs normally instead of carefully, like an old lady. I was 'sold' instantly on scleral lenses.
Serum drops alleviated pain to a point but my depth perception was still way off and my quality of life was not helped much.
I live in a dry climate so I use a humidifier often. Cleaning it isn't fun but it's still worth using.
I also use goggles at night with a heavier eye gel.
Getting enough sleep, eating healthier with less sweets and exercising also help my eyelid condition.
I also go to a caring and knowledgeable therapist so that my stress level is more manageable. I am learning how to handle stress better.
Are there any dry eye resources you'd like to recommend?
Dr. Jacobs at MEEI put in the scleral lens which gave me my life back to a great extent.
The Boston Sight Foundation helped me to get PROSE lenses and learn how to put them in. I never had to put anything in my eyes before other than drops or ointments. They did a great job training me in putting the lenses in, taking them out and caring for them properly as well as making sure the fit was right.