Microphthalmia support – is there a role for you?

Children readily adapt to their new eye.

Children readily adapt to their new eye.

In the Adjusting to Eye Loss Mind Map we make the observation that children readily adapt to their new eye.

With young children we find that it is parents that carry most of the burden of worry. Having said this I have noticed on the Microphthalmia Yahoo chat group several questions relating to children’s reactions to fitting and removing eye prostheses.

I have been following the groups discussions for a while now and there are a few questions that come up regularly. Parents are most interested in the question of how their children are going to be treated socially as they grow up. This includes going to school, dealing with negative feedback from other children and later on finding a life partner.

There is also much discussion about conformer shells, orbital expanders and the physical process of orbital expansion and cosmetic enhancement.

Parents want to know how early to start the conformer shells, How often should they be removed? What do you do about the irritation in the eye socket and recently there was a question about discharge in the socket.

Most questions on the site lead to discussions with several responses from other parents. While I don’t always agree to the advice given I have not responded on the site as I believe the site should remain a support site for parents of children with Microphthalmia.

I would however like to encourage people who have grown up with Microphthalmia to have a look at the site. There is not a lot of feed back from people who have lived the experience and I believe this would be beneficial for members.

There are several groups that have a similar focus to the Microphthalmia Yahoo chat group. An early objective of our site is to provide good information about support groups. If you have had a good experience with a support group or you wish to promote a new support group we would love to help promote your group.

6 Comments

  1. Avatar for Eric Eric on September 18, 2009 at 1:21 am

    Im a 25 year old male born with micro in my right eye. I have lived a very normal life and it hasnt effected me at all.

  2. Elenin on July 22, 2011 at 9:12 pm

    Nice post….

    […] Incredibly well explained, even though this particular article is definitely not newly posted. We agree with almost all of your primary specifics, the only suggestion I would have to offer is to take in a handful more related photos. Thank you. […

  3. Avatar for Janice Anderson Janice Anderson on January 14, 2012 at 1:37 am

    My son was born with micro in his left eye and is now sixteen months old. He was fitted with his first eye at ten weeks old. Though obviously very distressing diagnosis when he was first born it is a basic non issue now. We went every month or so for his first year for a new fitting but now are able to go every three months. It is hard at first with many questions, stares from strangers but it gets better. At 16 months old you would never know he wears a scleral shell. It gets easier! God bless

  4. Avatar for Lauren Lauren on February 25, 2013 at 4:03 am

    I am a 20 yr old female with micro of the left eye. I have only recently realized/considered that there are support groups out there for this issue. I will be joining!

  5. Avatar for Zoe Zoe on July 2, 2013 at 7:14 pm

    I’m wondering if my son was late to get his eye,he to his first eye at 1 y and 1 month,it’s very tiny his micro eye,everyone I read say they get the eye within months of birth?

  6. Avatar for Jamie Jamie on August 4, 2015 at 6:59 pm

    I’m 23 and I have micro in my right eye. I also have heterochromia which I feel makes the diffent sizes of my eyes more noticeable. I was born with a cataract in the smaller eye and since I remember I’ve been in and out of eye dr apts and surgeries. I’ve worn contacts, glasses and a patch -and at one point all at once, and under the age of five.

    Still to this day I have double vision that I try working on improving with daily exercises. The good eye is far sighted and the right eye is near sighted with a stigmatism and won’t dialate due to a surgery from grade school. You can safely assume that I have no depth perception and won’t be seeing any 3d movies anytime soon. I alternate between glasses and contacts that improve clarity, but unfortunately does not help the eyes work together as one.

    Some late nights I research ways to fix or improve my eyes, but all that I’ve read the only “treatments” or procedures are for infants or suggest a prosthetic eye. (Not too sure how I feel about getting a glass eye, won’t it look like I have MORE of a lazy eye when I look around? Not sure.)

    I avoid looking at people in the eyes and dodge pictures like the plague. When I do have to look at someone I squint my left eye a little in hopes to look symmetrical. ( I’m infamous for the half smile) Every time someone says “oh you have two different colored eyes! …and one eye is smaller than the other..” I just want to disappear in a corner and sob (so pathetic I know, but it just kills me) I feel like a freak the way people dubiously stare at me sometimes. I downright hate the way I look like two different people in one face.
    My husband says I worry too much and that he doesn’t even notice it, but I know he’s just saying that because there’s nothing I can do about it, and that’s just how I am.

    Adding a little extra makeup to the right eye helps a little but doesn’t do anything for the size of the iris. I’m thinking of buying a fake contact lense, but my right eye pulls into the center a noticeable amount so I’m not sure if a lense would make much of a difference.

    Not really sure why I’m posting my heart out here, but it feels okay-ish to confide in the strangers that might be dealing with the same issues.

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