Help wanted: son has Keratoconus

[space_cadet]

Thinking of you both, let u sknow how how you get on.
x

[Jenny Allen]

Hello Before the hospital appointment I was phoned to say test results back therefore appointment made, BUT when we got there guess what they could not find them!! specialist said that someone had read them and said everything was okay. When they find them the specialist will write to us to confirm. While there Jay had a eye test by a new person who tested him under florescent lights and he did better than in dark. She tried to rush Jay, but he called me over and said he needs to concentrated on the letters and he might be able to do better (good for him speaking up) I told the woman who looked a bit taken back but tested him again and he did read a couple more letters. Jay said that it helps him if he squints.
Another person looked at Jays eyes and while doing this noticed a birthmark by his collarbone. He asked if Jay had any more of these marks which he has. He then spoke to us about cafe au lait marks and the link to neurofibroma's (is there also a link to Keratoconus? , Jay had one of these removed from his head about 8 months ago, the eye hospital are aware of this. I believe that neurofibromas can connect to nerves, Jays was on back of his head so I don't know if it could have been connected to his optic nerve. I'm going to book an appointment with his GP for check up.

Jaydon has taken up boxing now so something else for me to worry about lol.

Life is for living & were still smiling. Jenny & Jay

[Andrew MacLean]

So far as I know, neurofibroma is a benign tumour; they are normally removed safely but even if left they do not threaten the life of the person who exhibits them. There is some reported case history on the link between people with neurofibromas who go on to develop mixed connective tissue disease; Keratoconus is, among other things, associated with connective tissue disease.

So there may be an association between Jay's neurofibromas and his keratoconus, but what the association will remain a mystery for a while to come!

About squinting, we can all affect our sight in the short term by squinting but it is probably not a good idea to base long term vision on the strategy: it causes strain and will lead to headaches.

I am sorry that things went awry at the ophthalmology clinic, but glad that Jay is finding his voice with optometrists! More power to him!

All the best

Andrew

[rosemary johnson]

Hallo.
Losing test results? - what a bummer! HOw frustrating. HOpe they turn up PDQ.
People with KC can often see a bit more if we screw our eyes u p - it's because it squashes the saggy cornea back into a bit ore of a regular shape.
I'm fascinated y the birthmarks quesiton, though - I've got masses of brown brithmarks, all over the place. Mostly like freckles, some a bit big for ordinary freckles. IN summer, I get a lot morefrecles, but some of them stay in place all year round.
Nevr once thought they may link to KC. Interesting.
Rosemary