- Holmes-Adie Syndrome
- Interviews
Elaine's interview
How did all start?
When I was in my early 20’s a co-worker pointed out my pupil difference. My left pupil was completely dilated. How did I not notice this myself? I went to an ophthalmologist who diagnosed it as Adies Syndrome. I didn’t have deep tendon reflexes either. I have excessive sweating as well. He told me there was nothing I could do about it and that there wasn’t a lot of information because it is very rare. He said it mostly happens to women with otherwise healthy eyes. I have been very self conscious about this pupil difference because it has been pointed out to me a lot. One time a coworker went to her boss who went to my boss to find out what was wrong with me. Over time, I was diagnosed with bilateral Adies, both eyes are affected and the right pupil is very sluggish but noticeably smaller than the left pupil. Over the past few years, I’ve noticed an intolerance for heat, which is just about unbearable.
Do you already have a diagnosis? How long did it take you to get it?
I’m about to see a neuro-ophthalmologist to determine what my Syndrome exactly is and to see what can be done to alleviate my symptoms.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Ophthalmologist
What has been the most useful thing for you so far?
Sunglasses and patience
What have been your biggest difficulties?
The intolerance to bright lights, excessive sweating, intolerance to heat and inability to drive at night.
How has your social and family environment reacted? Have your social or family relationships changed?
They have no understanding or compassion about this at all. They basically dismiss me when I try to talk about it.
What things have you stopped doing?
I stopped taking Pilocarpine drops to make the left pupil smaller. One drop would make my pupil constrict to a pin dot for hours. I would be blind for hours. I was using them to address the uninvited comments.
What do you think about the future?
I think more research needs to be done.
What would you like to do if you didn’t have your condition?
Drive at night. Sit in the sun. Shake hands with someone without having to apologize about my sweaty hands first. Make eye contact and not feel embarrassed.
If you had to describe your life in a sentence, what would it be?
Strange
Finally, what advice would you give to a person in a similar situation?
Keep on top of things, pay attention to your symptoms, find a good doctor that you trust.
