I don't 'see' why...

By Todd, Blepharospasm-oromandibular dystonia syndrome, United States, February 28, 2019

11 years ago I was standing in my daughter's living room, when her husband looked at me and asked: "do you need some eyedrops?" Huh? "Why do you ask?"

"Your blinking a lot." Sure enough, I hadn't really noticed, but I was.

Months later, finally seeing an eye doctor, he said: "I can see it from across the room, you have blepharospasm."

A new word to me. I entered a new world. A new underworld.

11 years later, I'm bordering on being functionally blind. Sure, my eyes still 'see,' in that they process light as designed. What they don't do is stay open, now, for more than a few seconds at a time.

I can't make them stay open, my brain forces them closed. The treatment options are limited. The disease impacts mostly 'older' people. There isn't much ROI for R & D for causes/treatments/cures for 'old folks' diseases.'

The treatment I've been undergoing for 11 years involves a couple dozen injections into my muscles of my face, mostly around the eyes, and IN the eyelids themselves. Every 3 months.

Now, the injections hardly help, and when it does help it's only for 4 or 5 weeks of the 12 I must go through between treatments.

The two alternative treatments are not really viable, the side effects being untenable.

I'm at the point to where I shouldn't be driving at all...but I need to, to get to work. To work to have the insurance to pay the $4K to $5K per treatment costs.

Even AT work, I'm having greater difficulty doing it. 

The worst part? My grand daughter, in whom the sun rises and sets, asks me why my eyes are closed all the time when I'm not sleeping, why I blink so much, why I blink so hard.

I have to learn to be blind. I don't recommend this to anyone.

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.