dear LIsa I wear scleral lenses and swim with them in. If they are a good fit they will also help keep most of the chlorine out of your eyes. Corneal lenses however would be likely to fall out.
Is it you that Anne K. has e-mailed me about? If you are interested in the KC families reseach you can e-mail me on astigle@aol.com or phone me on 01634 864597.
Quicktopic posts: Aug 2002
Moderators: Anne Klepacz, John Smith, Sweet
-
umbilica@umbilical.demon.
In message <20020802211221.12AE345B6@pegasus.imagiware.com>
qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com writes:
Does anyone swim with their lenses in? I never have in case
they wash out, but hope to holiday in Florida later this
year - which will include swimming. Are there any goggles
anyone could recommend please. Tubs
Hi!
You don't say what sort of lenses you have. I wear sclerals and I always swim with them in - I think they are big enough not to
wash out. I do keep my eyes with tight shut any time they are
under water, though!
Do you get KC treatment in the Isle of Man or do you have to
come over to Liverpool, Moorfields, wherever?
Best of luck with the Florida holiday, also with the horses and
getting people to lug the hay bales about.
Rosemary
--
Rosemary F. Johnson
qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com writes:
Does anyone swim with their lenses in? I never have in case
they wash out, but hope to holiday in Florida later this
year - which will include swimming. Are there any goggles
anyone could recommend please. Tubs
Hi!
You don't say what sort of lenses you have. I wear sclerals and I always swim with them in - I think they are big enough not to
wash out. I do keep my eyes with tight shut any time they are
under water, though!
Do you get KC treatment in the Isle of Man or do you have to
come over to Liverpool, Moorfields, wherever?
Best of luck with the Florida holiday, also with the horses and
getting people to lug the hay bales about.
Rosemary
--
Rosemary F. Johnson
-
Janet Manning
Dear Lisa,
I have always swum in lenses - RGPs, and now sclerals. Without them I wouldn't know which way the beach was at the seaside and in pools I'd get run down by those men who get their heads down and swim regardless of who is in the way. I wear tight fitting goggles, so that if the lens does fall out (RGPs used to) then I can catch it in the goggles and pop it back in.
I was advised not to swim in softperms as the soft part would absorb the water. I only had these lenses for about a year after grafts, when I couldn't swim anyway.
Recently I tried swimming in sclerals with the goggles in a pool and it was great. Felt really confident to put my head under. Problem was that I had a severe allergic reaction to the chlorine, which exacerbated the eczema around my eyes - so haven't been back. Did swim in the sea in Spain though. Used goggles, but didn't put my head under. Goggles just make me feel less worried about losing the lenses should they shift. Got the goggles from my optician.
Happy swimming!!
Best wishes, Janet
I have always swum in lenses - RGPs, and now sclerals. Without them I wouldn't know which way the beach was at the seaside and in pools I'd get run down by those men who get their heads down and swim regardless of who is in the way. I wear tight fitting goggles, so that if the lens does fall out (RGPs used to) then I can catch it in the goggles and pop it back in.
I was advised not to swim in softperms as the soft part would absorb the water. I only had these lenses for about a year after grafts, when I couldn't swim anyway.
Recently I tried swimming in sclerals with the goggles in a pool and it was great. Felt really confident to put my head under. Problem was that I had a severe allergic reaction to the chlorine, which exacerbated the eczema around my eyes - so haven't been back. Did swim in the sea in Spain though. Used goggles, but didn't put my head under. Goggles just make me feel less worried about losing the lenses should they shift. Got the goggles from my optician.
Happy swimming!!
Best wishes, Janet
-
gustavo
hola daniel, yo tambien soy mexicano, y estoy en tus mismas condiciones, si quieres escribirme, mi e mail es gustavobu@24horas.com
-
Hyacynth
I was diagnosed with keractoconus when I was thirteen. I am twenty-eight now. I dream of waking up with perfect vision one morning. Lately, I've been having a problem with very dry eyes in the morning and at night (before and after I wear my contacticos) I've tried hypotears, but I get sensitive to them after a while. Are there any suggestions. I feel like I have two rocks stuck in my eye sockets. I am also very tired of people asking why I just don't wear glasses. Also, did you know that the DMV changed the eye charts? I had them memorized and everything, the nerve!
-
Sam George
-
nisah
To Freddy Bull.
Thanks for your reply re:laser treatment AFTER corneal grafts. My 19 year old son has had laser treatment on 'part' of his corneal grafts. Unfortunately he has lost all near vision in this eye.He is extremely depressed at present. He sleeps all day, has lost 2 stones since his operations. He has had grafts in both his eyes. One in May 2000 and the right eye in April 2001. He has continued to struggle with As education for the third year this year. He has now sat for only 2 exams at As level. He desperately wanted to go to university to complete further eduation but is at present so depressed he does not know where to go from here. He has severe eczema and has many allergies, his surgeon is rightfully wary of considering contact lenses and has given him glasses which my son feels makes him very dizzy and unbalanced. He suffers from almost all the symtons discussed on this site e.g. photophobia, dry eyes, eczema around the eyelids (he also has a herpes virus around his eyes which affect his sight when it flares up, itchy eyes,sensitivity to light, and now we have been told he is starting to suffer from cataract because of essential over-use of steroids (has anyone come across this information???}A stitch is embedded in his left eye which was too deep for the surgeon to remove and we were told that it would not cause any problems in future. At present he lives by squinting all the time, the muscles on his forehead are taking the brunt of this. He gets unbearable headaches.We are at our tethers end. I wonder where all this is going to end. Sorry about this sad message. I cannot be brave and strong any more. Nisah.
Thanks for your reply re:laser treatment AFTER corneal grafts. My 19 year old son has had laser treatment on 'part' of his corneal grafts. Unfortunately he has lost all near vision in this eye.He is extremely depressed at present. He sleeps all day, has lost 2 stones since his operations. He has had grafts in both his eyes. One in May 2000 and the right eye in April 2001. He has continued to struggle with As education for the third year this year. He has now sat for only 2 exams at As level. He desperately wanted to go to university to complete further eduation but is at present so depressed he does not know where to go from here. He has severe eczema and has many allergies, his surgeon is rightfully wary of considering contact lenses and has given him glasses which my son feels makes him very dizzy and unbalanced. He suffers from almost all the symtons discussed on this site e.g. photophobia, dry eyes, eczema around the eyelids (he also has a herpes virus around his eyes which affect his sight when it flares up, itchy eyes,sensitivity to light, and now we have been told he is starting to suffer from cataract because of essential over-use of steroids (has anyone come across this information???}A stitch is embedded in his left eye which was too deep for the surgeon to remove and we were told that it would not cause any problems in future. At present he lives by squinting all the time, the muscles on his forehead are taking the brunt of this. He gets unbearable headaches.We are at our tethers end. I wonder where all this is going to end. Sorry about this sad message. I cannot be brave and strong any more. Nisah.
-
Nicky
Hello! I'm from London and was diagnosed with KC about a yr ago and would love to tlak other members who understand the situation. My interests include: Writing,playing guitar,reading, indie,punk,post punk and post rock music. So, hopefully, i'll hear from somebody soon. nickymogwai@yahoo.com
-
Freddy Bull
Dear Nisah
I am so sad having read your post. This disease/disorder can be cruel and so debilitating. Some days we can see the positives and other days we are swamped by it all. I really can relate to your situation. I know the headaches, photophobia, post-graft and the sense that you can't get on with life.
The solutions to each of these problems are hard won - each problem has to be addressed separately whilst life seems to slip by. But you will be able to find ways of dealing with each one. Then slowly your son will get back some control in his life. Routines and good eye care are so important. Thank goodness baseball caps are trendy! and sunglasses for the
photophobia.
Do you think your son's doctors understand the effect it is having on his life? I have had lots of good care but until I really told them how I was feeling I did not get serious intervention. I tend to be positive by nature and don't publically let my frustrations show so it was really hard to describe that "end of tether feeling" you talk about, but I now have a better relationship where my concerns are taken seriously.
Does you son meet anyone else with KC? Maybe Anne Klepacz will know of someone his age. Sharing the problem and having a laugh at the frustrations can help alot. Or use the web based email links like this one or the american KC-link? I have found despite a loving family who try hard to understand that the immediate contact with others who DO understand has been absolutely invaluable.
Keep in touch with this KC group. We all share these frustrations at times and are here to help each other through.
Freddy
I am so sad having read your post. This disease/disorder can be cruel and so debilitating. Some days we can see the positives and other days we are swamped by it all. I really can relate to your situation. I know the headaches, photophobia, post-graft and the sense that you can't get on with life.
The solutions to each of these problems are hard won - each problem has to be addressed separately whilst life seems to slip by. But you will be able to find ways of dealing with each one. Then slowly your son will get back some control in his life. Routines and good eye care are so important. Thank goodness baseball caps are trendy! and sunglasses for the
photophobia.
Do you think your son's doctors understand the effect it is having on his life? I have had lots of good care but until I really told them how I was feeling I did not get serious intervention. I tend to be positive by nature and don't publically let my frustrations show so it was really hard to describe that "end of tether feeling" you talk about, but I now have a better relationship where my concerns are taken seriously.
Does you son meet anyone else with KC? Maybe Anne Klepacz will know of someone his age. Sharing the problem and having a laugh at the frustrations can help alot. Or use the web based email links like this one or the american KC-link? I have found despite a loving family who try hard to understand that the immediate contact with others who DO understand has been absolutely invaluable.
Keep in touch with this KC group. We all share these frustrations at times and are here to help each other through.
Freddy
-
nisah
Freddy, thank you for your prompt reply. I have spoken to Anne several times and she has been extremely supportive and also suggested as you do, that my son gets in touch with someone who may be going through similar experiences but he does not seem to want to. For the past few years he had been extremely optimistic thinking his vision will be normal after his grafts; that it was only a matter of time but recently his attitude has changed - its almost as if he is tired of waiting for something positive to happen. With us it has been the case of one step forward and even before we can enjoy the improvement, something goes wrong and its two steps backwards. We end up worse than before. It is very encouraging to know that his actual eyes (at the back) are healthy, its just the corneas that need to be looked after and with time he will be able to see reasonably well. I feel better after sharing my experiences with someone. God bless - keep up the good work!
Return to “General Discussion Forum”
Who is online
Users browsing this forum: No registered users and 63 guests