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.