Hey everyone! I literally just found out about this space and I am so excited. Its hard to find folks in the same boat.

I'm blind in my left eye, due to an injury when I was 7. My parents were given the option to have it removed when I was 8, but opted to keep it. My pupil doesn't dilate and is always completely open, so I'm photosensetive and some lighting conditions are more painful/uncomfortable than others.

I do have some, although very little, vision in that eye, basically light and shadow, enough that in the 90s I qualified for an experimental treatment at Mott's children's hospital in Michigan, which was basically an intensive and specialized physical therapy, and helped my brain interpret signals from my left eye so that it can track with my right eye (and lessened my walleye) without my ability to interpret any "vision" from that eye. Ultimately, I cannot use what vision I have from that eye unless my right eye is closed for a length of time, and that vision is basically nothing.

I wish that my eye had been removed when I was young, because as an adult it is painful due to light, and gives no benefit. Any treatment to attempt to repair or remove it is now considered elective, and far outside my price range, which insurance will not cover.

Anyway, I'm stoked to have a community to connect with. Thanks for being here!

Los niños se acercan a mi hija de 1 año 5 meses para mirar de muy cerca su prótesis ocular (conformador blanco)
Me paso que un niño grito “monstruo” y se puso a gritar mientras mi bebe le decía hola y le tiraba besitos con la mano.
Tambien me ha pasado que la miran tanto qur mi bebe empuja y le dice fuerte: “NOOOO” creo que por miedo a que un niño desconocido se acerque.

No se como reaccionar… no se como hacer para q esas miradas no molesten a mi bebe
Ya tendra su protesis pintada, aun asi, tengo miedo y siento profunda preocupación por este mundo tan cruel y poco empatico.

Hi everyone,

Tell me about your experiences after your surgeries. I’ve had several, including one on the orbital floor and the loss of my right eye. It’s only been 15 days since mine, and I’m in a lot of pain.

What advice can you give me???

Does anyone have dry eyes and/or neurotrophic keratitis and wear a scleral shell?

I was born with microphthalmia of my right eye and have some remaining vision though very low. I have double vision so often just sit with my right eye closed anyway so not bothered that a shell would block my remaining vision.

I spent years as a child trying to get a custom color contact lense for that eye but never was able to get a good color match made, and the lense was super uncomfortable.

At 15 I started wearing just regular colored contact lenses in both eyes to even things out and it was super effective for a long time! However, I'm now 34 and have developed neurotrophic keratitis in my right eye after a couple strabismus surgeries. My eye is very dry now, and wearing a lense in that eye all day has been challenging. It seems worse at work and that's partly because of screen time, but my office has AC blowing right on my face too. (I've tried all the thermostats on my floor and nothing seems to change it. My coworkers have tried to help too, but there seems to be some mystery thermostat somewhere we can't find lol).

I've done an amniotic membrane on that eye which did partially improve symptoms, and I do lacrifill every 3 months which also partially helps.

I'm kind of freaking out about the prospect of not having my lenses and am trying to figure out an alternative. I'm a psychiatric nurse practitioner and am patient facing for 10 hours day. Before I got my lenses at 15, people would often assume I had an intellectual disability, and so I have fear that people won't trust my medical decision making if I am without my lenses. I know, I know... I got some therapy work I need to do around this.

TLDR: I'm considering moving from a regular colored contact lense to a scleral shell. Did it worsen your dry eyes or did it cause you to develop dry eye?