Archive for the ‘Support Groups’ Category


Losteye.com – What Can I Say

Debbie AtkinsonWe welcome guest blogger Debbie Atkinson.

“Losteye…..what can I say??

I remember researching the procedure of evisceration when I had been told that was the plan.

I was desperate for some insight and to speak with someone who had been through the same.

I just by chance stumbled across Losteye.com after typing in lost eye in the google bar and hey presto along came the lifeline, however I did not know this at the time.

The Editor of this website is Jay Adkisson from South Carolina USA, who himself is monocular following a diagnosis of choroidal melanoma.

He set up the site to give information and support to those who have recently lost an eye, or who may lose an eye due to surgery, disease, etc.

The part which I found, and still do find the most helpful is the discussion forum.

Here you will meet some of the most wonderful awe inspiring people you will ever have the priviledge to meet.

You can talk about any concerns you may have and you will receive almost immediate advice.  This will be honest and from people who have been in your exact position so know what they are talking about.

You can also have a bit of fun on there too, with the moolah lounge where you can have some great lighthearted discussions.

Many a time I found myself sitting up at 2am, scared witless or upset at what someone had said that day or just wanting some sort of comfort.  I’d  find some great people on Losteye.com who would always always make me feel a hundred times better.

The site helped me move on and realise how lucky I actually was.  If it wasn’t for Losteye.com I dare say would have crumpled and heaven knows where I would be now.

I will advise anyone who has lost an eye, going for surgery to remove an eye or is a relative of someone losing an eye, check out Losteye.com and join to the family…..you will never want to leave.”

Debbie Atkinson


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.