Quicktopic posts: Aug 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Sue Ingram
Dear Nisah, sorry to hear that your son is experiemcoing so many problems at present. Has he ever been offered scleral lenses post-graft? These can often be very successful after a graft, whereas sometimes it is not possible to fit rgp corneals, maybe it would be worth him trying these? Where do you live? If you would like to contact me direct on sue.ingram@virgin.net then I can give you more details on sclerals and where to get them from. I do hope things get sorted soon for your son,. As Freddy says, we have all been through those baaaaad times with KC, we have lived through them and come out stronger! Take care. SUE
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Sue Ingram
Dear Tubs (822), I have swum (?) for at least 20 years with my contact lenses in - ever since it was not possible for me to see the edge of the swimming pool contact-less! Initially I started wearing goggles with my rgp corneals but these soon got left behind as whatever I tried I could not seem to stop them misting up. So, I have probably been swimming for over 15 years in rgp corneals and not lost one in the swimming pool - amazing! You get used to those people whizzing by and causing tidal waves which go over your head - you just close your eyes in time! I do have a spare pair of rgp corneals; if I didn't I would probably have made sure I wore goggles. I now also have scleral lenses and tend to go swimming in them as there is NO CHANCE that they will fall out. I always say the best thing is to 'suck it and see' with anything that you want to do - you will probably be surprised what you can do whilst wearing contact lenses. Take care and have a wonderful holiday - Florida is great. SUE
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umbilica@umbilical.demon.
Dear, dear Nisah,
I'm so, so sorry to her you and your son are having such a
horrible rough time. Have a big internet hug! - and one for him too, or whatever a 19 year old male wants in place of a hug.
Please, please do make sure you have some support for you -
whether that's a shoulder to cry on, or someone with whom to
scream in frustration, or to go out to an old quarry and throw
rocks about..... you're having to cope with a lot in supporting your son, and it's not right you should have to shoulder all
that by yourself. SO please look after yourself too. Feel free to come and talk to us here, of course.
As regards your son, 3 things strike me:
First, it sounds to me as if he needs help with his depression
before anything else. I'm not surprised he's getting depressed
- I get depressed about my deteriorating eyes at times and he's
both worse and been hit by so many blows so quickly. SO I don't blame him for being depressed, but I do think he needs help with it - I'm not sure what; I don't think going to the GP and asking for Prozac is the thing. Maybe what might help would be the
place to go and scream and throw things about in frustration? -
or even the shoulder to cry on? And then I'd suggest a
practical approach of exploring options - I mean, practical
things he could do, ways ahead, possible routes - like a
disabled career advisor, or disabled students advisor.
Secondly, the headaches and furrowed brow: I wonder if you can
find a physio - or "trainer" as they call them at Wimbledon!
SOmeone who can do an "unknotting" head-and-neck massage, and
maybe teach him relaxation techniques/exercises to relieve the
tension at regular intervals while he's working, maybe even
teach him (or you) how to do the head and neck massages too.
THirdly, is he getting any practical study help at all? If not, he should be. I mean, things like, can he get any of his
books/study materials on tape and listen to them? Could he get
them on disk/CD? Could he get a computer with accessibility
features so he get the computer to talk to him and not have to
look at the screen? - or at least be able to adjust the size and colours of what's on the screen to be the best for him? Could
he get a scanner, so books/printed pages can be scanned in, and
then either displayed on the screen enlarged or output as
speech? Would magnifying glasses and/or a CCTV system that just enlarges and changes colour help? Has he/have you ever been
told about the scheme for disabled study assistance grants? -
funds to buy the special equipment, or even to pay for a helper
to come in and read/scribe for him.
I don't know where you live, or which hospital you go to - but
maybe they could refer you to a medical social work department?
- or maybe your local council social services or the Disability
Employment Advisors at the Job Centre might be able to help. If you are within range of central London, you can arrange to get a demo of lots of the equipment at the RNIB, and they have a range of info sheets/tapes about the types of equipment, sources of
funding, etc.
Good luck!!!!
Lastly, can you or your son persuade his surgeon to get him
registered as partially-sighted? - since the Disability
Discrimination Act, the old ideas of this as a "stigma" do not
apply as they once may have done, and there are doors (to
training, etc) that just don't open without a registration
number. And if you/he does end up buying special equipment,
then if he's registered he'll get if free of VAT, which can be a great relief when you're trying to make the cash stretch.
starting to suffer from cataract because of essential over-use
of steroids (has anyone come across this information???}
Never heard of that one...... oo-er!
Hope that at least some of this is useful. Do stay in touch,
and meanwhile HANG IN THERE!! to you both.
Rosemary
--
Rosemary F. Johnson
tactical@umbilical.demon.co.uk - listening in on HAL speech equipment
I'm so, so sorry to her you and your son are having such a
horrible rough time. Have a big internet hug! - and one for him too, or whatever a 19 year old male wants in place of a hug.
Please, please do make sure you have some support for you -
whether that's a shoulder to cry on, or someone with whom to
scream in frustration, or to go out to an old quarry and throw
rocks about..... you're having to cope with a lot in supporting your son, and it's not right you should have to shoulder all
that by yourself. SO please look after yourself too. Feel free to come and talk to us here, of course.
As regards your son, 3 things strike me:
First, it sounds to me as if he needs help with his depression
before anything else. I'm not surprised he's getting depressed
- I get depressed about my deteriorating eyes at times and he's
both worse and been hit by so many blows so quickly. SO I don't blame him for being depressed, but I do think he needs help with it - I'm not sure what; I don't think going to the GP and asking for Prozac is the thing. Maybe what might help would be the
place to go and scream and throw things about in frustration? -
or even the shoulder to cry on? And then I'd suggest a
practical approach of exploring options - I mean, practical
things he could do, ways ahead, possible routes - like a
disabled career advisor, or disabled students advisor.
Secondly, the headaches and furrowed brow: I wonder if you can
find a physio - or "trainer" as they call them at Wimbledon!
SOmeone who can do an "unknotting" head-and-neck massage, and
maybe teach him relaxation techniques/exercises to relieve the
tension at regular intervals while he's working, maybe even
teach him (or you) how to do the head and neck massages too.
THirdly, is he getting any practical study help at all? If not, he should be. I mean, things like, can he get any of his
books/study materials on tape and listen to them? Could he get
them on disk/CD? Could he get a computer with accessibility
features so he get the computer to talk to him and not have to
look at the screen? - or at least be able to adjust the size and colours of what's on the screen to be the best for him? Could
he get a scanner, so books/printed pages can be scanned in, and
then either displayed on the screen enlarged or output as
speech? Would magnifying glasses and/or a CCTV system that just enlarges and changes colour help? Has he/have you ever been
told about the scheme for disabled study assistance grants? -
funds to buy the special equipment, or even to pay for a helper
to come in and read/scribe for him.
I don't know where you live, or which hospital you go to - but
maybe they could refer you to a medical social work department?
- or maybe your local council social services or the Disability
Employment Advisors at the Job Centre might be able to help. If you are within range of central London, you can arrange to get a demo of lots of the equipment at the RNIB, and they have a range of info sheets/tapes about the types of equipment, sources of
funding, etc.
Good luck!!!!
Lastly, can you or your son persuade his surgeon to get him
registered as partially-sighted? - since the Disability
Discrimination Act, the old ideas of this as a "stigma" do not
apply as they once may have done, and there are doors (to
training, etc) that just don't open without a registration
number. And if you/he does end up buying special equipment,
then if he's registered he'll get if free of VAT, which can be a great relief when you're trying to make the cash stretch.
starting to suffer from cataract because of essential over-use
of steroids (has anyone come across this information???}
Never heard of that one...... oo-er!
Hope that at least some of this is useful. Do stay in touch,
and meanwhile HANG IN THERE!! to you both.
Rosemary
--
Rosemary F. Johnson
tactical@umbilical.demon.co.uk - listening in on HAL speech equipment
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nisah
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Janet Manning
Dear Nisah,
I can really relate to how your son feels. Last January yet again, I looked like a red panda with eczema round my eyes and chronic allergic conjunctivitis.
I have had grafts in both eyes and had to give up my job and retrain for a new career with which I can cope. I was trying to write my dissertation and complete other work in January and only managing at best 2 hours a day with lenses. It is SO frustrating, when you know, like your son, you are intellectually capable of doing the work, but you cannot read the books etc.
My solution - Chinese herbal therapy! I took herbs from Jan. until this month and my eyes are now clear of eczema and less inflamed than since the grafts. I am now able to wear scleral lenses 12 hours a day and sometimes longer. I don't know where you live. The doctor I saw is in Oxford - a GP, but also a chinese medical practitioner. Treatment must have cost me about £300, but it's money well spent. Maybe your son would be able to wear lenses if the eczema was under control. Vasoline is brilliant for keeping the eyelids soft and healing the cracks. Avoid getting it in the eye though.
I still get dry eyes, but much improved with the use of sodium cromoglicate drops x4 a day, with Lacrilube at night. I also irrigate with Refresh eye drops (from Boots or supermarkets) if they feel dry in between e.g. when using the computer lots or driving. (Yes, I can drive again now!) All these conditions are connected and interact with each other. If the eyes are well irrigated they are less itchy and red.
Have just discovered wraparound glasses. They're fab, especially for driving. Absolutely no glare. Was stuck in a downpour on the M4 yesterday with the sun shining through the rain and still managed to drive without squinting!! Have worn hats constantly since the grafts. With wraparounds I don't need one even in very strong sunlight. Wraparound sunglasses are available from the RNIB. They will send you a catalogue. If these are too uncool for a 19 year old, suggest you try cyclist's wraparound sunglasses from sports shops.
A magnifying glass (from opticians) may help your son to read. Short reading sessions with frequent breaks avoid headaches.
Writing in black felt tip might help when making notes. There are loads of study aids out there, as mentioned by others. Your son can go to Uni. It may just take a little longer. I had my grafts 3 years ago and only now feel I've cracked all the associated problems. I only managed to study by working full-time on a part time course.
Sounds as if your son's glasses need adjusting. Sometimes they have to compromise the final level of correction in order to avoid the dizziness he describes. If the two lens prescriptions are very different, this is what causes the discomfort.
Totally agree with Rosemary, about support for yourself. It will help you to help your son. One of my sons had severe eczema in his teens. I went to the homoeopath too and got lots of help from an Eczema Society support worker - there's another good source of help! You are welcome to email me too and we can exchange phone nos if you wish.
I have completed my course in homoeopathy and am just waiting for the official O.K. to start my practice. Am working under supervision at present and would be happy to try and help another KCer and student for only the supervision fee. Please email me on janetmanning@lineone.net if you are interested. I live near Oxford and we would have to meet for consultations, so don't know if this is practical. I agree with Rosemary about avoiding the Prozac route. Homoeopathy treats the whole person - depression and allergic conditions. If you are too far away, I could suggest someone near you from the Society of Homoeopaths lists.
Meantime, will be thinking of you.
All the very best, Janet
I can really relate to how your son feels. Last January yet again, I looked like a red panda with eczema round my eyes and chronic allergic conjunctivitis.
I have had grafts in both eyes and had to give up my job and retrain for a new career with which I can cope. I was trying to write my dissertation and complete other work in January and only managing at best 2 hours a day with lenses. It is SO frustrating, when you know, like your son, you are intellectually capable of doing the work, but you cannot read the books etc.
My solution - Chinese herbal therapy! I took herbs from Jan. until this month and my eyes are now clear of eczema and less inflamed than since the grafts. I am now able to wear scleral lenses 12 hours a day and sometimes longer. I don't know where you live. The doctor I saw is in Oxford - a GP, but also a chinese medical practitioner. Treatment must have cost me about £300, but it's money well spent. Maybe your son would be able to wear lenses if the eczema was under control. Vasoline is brilliant for keeping the eyelids soft and healing the cracks. Avoid getting it in the eye though.
I still get dry eyes, but much improved with the use of sodium cromoglicate drops x4 a day, with Lacrilube at night. I also irrigate with Refresh eye drops (from Boots or supermarkets) if they feel dry in between e.g. when using the computer lots or driving. (Yes, I can drive again now!) All these conditions are connected and interact with each other. If the eyes are well irrigated they are less itchy and red.
Have just discovered wraparound glasses. They're fab, especially for driving. Absolutely no glare. Was stuck in a downpour on the M4 yesterday with the sun shining through the rain and still managed to drive without squinting!! Have worn hats constantly since the grafts. With wraparounds I don't need one even in very strong sunlight. Wraparound sunglasses are available from the RNIB. They will send you a catalogue. If these are too uncool for a 19 year old, suggest you try cyclist's wraparound sunglasses from sports shops.
A magnifying glass (from opticians) may help your son to read. Short reading sessions with frequent breaks avoid headaches.
Writing in black felt tip might help when making notes. There are loads of study aids out there, as mentioned by others. Your son can go to Uni. It may just take a little longer. I had my grafts 3 years ago and only now feel I've cracked all the associated problems. I only managed to study by working full-time on a part time course.
Sounds as if your son's glasses need adjusting. Sometimes they have to compromise the final level of correction in order to avoid the dizziness he describes. If the two lens prescriptions are very different, this is what causes the discomfort.
Totally agree with Rosemary, about support for yourself. It will help you to help your son. One of my sons had severe eczema in his teens. I went to the homoeopath too and got lots of help from an Eczema Society support worker - there's another good source of help! You are welcome to email me too and we can exchange phone nos if you wish.
I have completed my course in homoeopathy and am just waiting for the official O.K. to start my practice. Am working under supervision at present and would be happy to try and help another KCer and student for only the supervision fee. Please email me on janetmanning@lineone.net if you are interested. I live near Oxford and we would have to meet for consultations, so don't know if this is practical. I agree with Rosemary about avoiding the Prozac route. Homoeopathy treats the whole person - depression and allergic conditions. If you are too far away, I could suggest someone near you from the Society of Homoeopaths lists.
Meantime, will be thinking of you.
All the very best, Janet
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nisah
Dear Janet, Thanks for your message. We have tried both the chinese herbal (he had an unbelivable eczema flare up after using a bath remedy) and homeopathic {for over a year) treatments before the operations but I have now made an appointment to see a Dermotologist privately on 16 August. We have visited the RNIB resouce centre in London and have got their catalogue. Yes, I would like to get in touch with you. I live in Croydon, Surrey.My biggest worry is getting my son motivated again without turning to anti depressants etc. - for him to make the most of what he's got - however little it may seem at the moment. I am so glad I learnt to use the internet, otherwise I would never have been able to get in touch with all of you - this I consider is for me as well as my son. God Bless.
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ally
Hey All,
Just popped by this site whilst searching for some info on Keretoconus as I have just been diagnosed. I am lucky so far in the fact that my vision is still pretty good. It is nice to know that there is a UK based support group on here. I have been told that I will require contact lenses and glasses as soon as I get a full eye exam for my prescription.
My real worry however is how quickly my sight will deteriorate and how much info I should give my boss. I know everyone is different but I would really like to hear from you folks out there.
Anyway take care and hope to hear from you soon.
Ally
Just popped by this site whilst searching for some info on Keretoconus as I have just been diagnosed. I am lucky so far in the fact that my vision is still pretty good. It is nice to know that there is a UK based support group on here. I have been told that I will require contact lenses and glasses as soon as I get a full eye exam for my prescription.
My real worry however is how quickly my sight will deteriorate and how much info I should give my boss. I know everyone is different but I would really like to hear from you folks out there.
Anyway take care and hope to hear from you soon.
Ally
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Janet Manning
Dear Nisah,
It would be good to hear from you.
My tel. no. is 01235 528974.
Does the hospital your son attends prescribe scleral lenses? I had to really push to be referred to Moorfields from another hospital in the London area, because they refused to prescribe sclerals.
They told me that sclerals were uncomfortable and difficult to learn to use. I found that the reverse is true. I learnt to use them very quickly - about 5 mins. and wore them for 12 hours the first day. The soft perms I had before were much more difficult and I found them hard to remove. Sclerals also give many people with KC much better vision. I can read a whole extra line on the chart, compared to any other lens.
Sclerals are also easier to tolerate when the eyes are inflamed, though I still have to reduce wearing time. They actually protect against many allergens e.g pollen, because they cover most of the visible part of the eye. My eyes ran far less this hay fever season than ever before, despite the nose getting up to its usual tricks!
They also move around much less because they are so big and don't fall out every time you move your eye rapidly.
Sclerals might be worth investigating for your son. If he could see for at least part of each day, I'm sure his depression would improve.
Have you heard of Calibre? They provide unabridged recorded books for blind and partially sighted people, free of charge, though donations are very welcome. Books come in the post - free. I find then invaluable for the time I spend without lenses, when I get fed up with sitting 3 foot from the TV. Their Tel No. is 01296 432339. They have a library of about 6,000 books, so there should be something your son would enjoy.
Do give me a ring. Look forward to hearing from you.
Janet
It would be good to hear from you.
My tel. no. is 01235 528974.
Does the hospital your son attends prescribe scleral lenses? I had to really push to be referred to Moorfields from another hospital in the London area, because they refused to prescribe sclerals.
They told me that sclerals were uncomfortable and difficult to learn to use. I found that the reverse is true. I learnt to use them very quickly - about 5 mins. and wore them for 12 hours the first day. The soft perms I had before were much more difficult and I found them hard to remove. Sclerals also give many people with KC much better vision. I can read a whole extra line on the chart, compared to any other lens.
Sclerals are also easier to tolerate when the eyes are inflamed, though I still have to reduce wearing time. They actually protect against many allergens e.g pollen, because they cover most of the visible part of the eye. My eyes ran far less this hay fever season than ever before, despite the nose getting up to its usual tricks!
They also move around much less because they are so big and don't fall out every time you move your eye rapidly.
Sclerals might be worth investigating for your son. If he could see for at least part of each day, I'm sure his depression would improve.
Have you heard of Calibre? They provide unabridged recorded books for blind and partially sighted people, free of charge, though donations are very welcome. Books come in the post - free. I find then invaluable for the time I spend without lenses, when I get fed up with sitting 3 foot from the TV. Their Tel No. is 01296 432339. They have a library of about 6,000 books, so there should be something your son would enjoy.
Do give me a ring. Look forward to hearing from you.
Janet
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Keith
Hi Ally,
I was prescribed with this about 8 years ago, and i dont' know alot about it still. I came across this site only last week, and it's been useful.
I've not noticed a significant deterioration in my sight since being prescribed, but i'm sure each case is different. I was told that over time it will deteriorate though.
In the meantim i've been wearing gas permeable lenses which help the one eye that's affected, but not really very well.
I was going to ask anyone else on this site whether they could recommend an optician that specialises in the prescription of lenses for people with KC, in the London area.
I had to try quite a few places before i could get seen the last time (most of the High st places aren't equipped). I ended up at Dolland & Aitchison, who tried, but not very successfully.
The strange thing is though, that if i swap my lenses over (i did this by accident) then the sight in my affected eye is almost normal.! So it can be done....
Keith
I was prescribed with this about 8 years ago, and i dont' know alot about it still. I came across this site only last week, and it's been useful.
I've not noticed a significant deterioration in my sight since being prescribed, but i'm sure each case is different. I was told that over time it will deteriorate though.
In the meantim i've been wearing gas permeable lenses which help the one eye that's affected, but not really very well.
I was going to ask anyone else on this site whether they could recommend an optician that specialises in the prescription of lenses for people with KC, in the London area.
I had to try quite a few places before i could get seen the last time (most of the High st places aren't equipped). I ended up at Dolland & Aitchison, who tried, but not very successfully.
The strange thing is though, that if i swap my lenses over (i did this by accident) then the sight in my affected eye is almost normal.! So it can be done....
Keith
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ali cooper
Hi Keith,
Thanks for your reply. With regards your question about optitions I am under the eye specialists at the local hospital and they do detailed scans of my eye. I am waiting to see the contact lens specialist, so I don't have my contacts yet. I will let you know how I get on.
Apparently another KC patient that has seen the specialists, at the hospital, has contact lenses which consist of the best of both worlds of hard and soft lenses. She has the hard gas-permeable lens covering the part of the cornea affected by the KC and the edge of the lens is a soft lens for comfort. I didn't know this was possible and apparently she gets the lenses on the NHS too. It maybe worthwhile seeing your GP to see if you can get referred to the hospital eye consultants rather than being treated by the optitian alone (assuming you are not with the hospital already) If you are with the hospital eye consultant see if they have contact lens specialists as they do at my local hospital and they will tailor make the lens for you.
Good Luck,
Ally
>From: QT - Keith <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: Tue, 13 Aug 2002 05:31:59 -0500 (CDT)
>
_________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail.
http://www.hotmail.com
< replied-to message removed by QT >
Thanks for your reply. With regards your question about optitions I am under the eye specialists at the local hospital and they do detailed scans of my eye. I am waiting to see the contact lens specialist, so I don't have my contacts yet. I will let you know how I get on.
Apparently another KC patient that has seen the specialists, at the hospital, has contact lenses which consist of the best of both worlds of hard and soft lenses. She has the hard gas-permeable lens covering the part of the cornea affected by the KC and the edge of the lens is a soft lens for comfort. I didn't know this was possible and apparently she gets the lenses on the NHS too. It maybe worthwhile seeing your GP to see if you can get referred to the hospital eye consultants rather than being treated by the optitian alone (assuming you are not with the hospital already) If you are with the hospital eye consultant see if they have contact lens specialists as they do at my local hospital and they will tailor make the lens for you.
Good Luck,
Ally
>From: QT - Keith <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: Tue, 13 Aug 2002 05:31:59 -0500 (CDT)
>
_________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail.
http://www.hotmail.com
< replied-to message removed by QT >
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