UK Keratoconus Self-Help and Support Association

Hi Cinzia
Good video - thanks.

Carleen

Hi Dee, Yes, it is tough when you know there are lots of options available but to be denied them due to the inability of our kids to cope with the treatment. You have to adopt a "day at a time" outlook. One of Jen's fellow residents in the house where she lives is an autistic self harmer a...

Hi, I'm so sorry to hear of your son's problems. My experience is similar to yours only your son seems to have more challenging behaviour than my daughter, Jennifer. She also has no speech and the ability of about a 12 month old so explainations are difficult. I always tell her what is happening jus...

Hi Andrew I'm not so worried about the idea of an implant but the loss of her close up vision. We have a few months to think things over and observe her before Jen has another hospital visit. Jennfier met me today (with her care giver) at the optomotrist to get fitted for glasses. First, she cried b...

Hi It's been a while since I last reported on Jennifer's eyes but she finally got her exam under general anaesthesia on Monday. It was pretty traumatic for her once the trip to theatre arrived and I felt so sorry for her as she was crying and looking at me with pleading in her eyes. :cry: She didn't...

Thanks everyone. Yes, it's wonderful to finally feel we have someone who is prepared to try for Jennifer. He's a lovely kind man and I can thank my friend (Nurse manager at the Hospital Eye Outpatients) for recommending him. As I said earlier - I'm not getting my hopes up this time but just feel ver...

You guys are inspiring. I'm so glad that things are going so well for Charlotte.

Carleen (Jennifer's mum)

Well, things have changed yet again! We saw a new specialist today - a Professor of Opthamology - and he says that there may be treatment options for Jennifer. He wants to examine her under GA. If there is nothing that can be done for her then he wants to be sure that he is confident in saying that....

It's been a while since I was on the forum so here's an update. I saw the private specialist yesterday with Jennifer and he said he wouldn’t do the cross linking on her for several reasons. 1. Her age. Since she is 31 he says that the KC would probably not advance much more. 2. Measurements. To do t...

Boy, was I gloomy or what yesterday :!: I have Jennifer tonight and it's great to see her. Her eye is looking better and I think a little less cloudy. She was very "squinty" tonight even with her drops but she could have just been tired. I've tucked her into bed so hopefully she'll feel a ...