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Hi Simon,

Woohoo! I knew taking a course about the human eye and all its conditions would

come in handy!

Keratoconus is a condition in which may cause corneal scarring, is more common

in younger people, generally those in their teens or 20s. This disease which

usually affects both eyes, causes the cornea to lose its normal, smooth

watch-glass shape and becomes shaped like an ice cream cone. The conical

protrusion of the cornea causes considerable distortion of light. Eventually

thinking and scarring of the cornea tissue may take place. Corrections provided

by glasses are inadequate and soft contracts conform to the irregular shape of

the eyes. A rigid lens may slow down the progression of the disease. If the

disease progresses to the point where contacts no long give satisfactory vision,

surgery may be required.

I believe it is caused by eyelids not fully closing (in people with CHARGE). The

eye dries out and is exposed to air which leads to cornea scarring. This is what

I have in my left eye and it is treatable with just simple moisturizing drops.

It will not get better but it slows the progression down quite a bit. It can be

a rather painful condition at times as well as frustrating as often the vision

in the affected eye fluxuates quite a bit.

Nieder

kerataconus

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

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Guest guest

Hi Simon,

Woohoo! I knew taking a course about the human eye and all its conditions would

come in handy!

Keratoconus is a condition in which may cause corneal scarring, is more common

in younger people, generally those in their teens or 20s. This disease which

usually affects both eyes, causes the cornea to lose its normal, smooth

watch-glass shape and becomes shaped like an ice cream cone. The conical

protrusion of the cornea causes considerable distortion of light. Eventually

thinking and scarring of the cornea tissue may take place. Corrections provided

by glasses are inadequate and soft contracts conform to the irregular shape of

the eyes. A rigid lens may slow down the progression of the disease. If the

disease progresses to the point where contacts no long give satisfactory vision,

surgery may be required.

I believe it is caused by eyelids not fully closing (in people with CHARGE). The

eye dries out and is exposed to air which leads to cornea scarring. This is what

I have in my left eye and it is treatable with just simple moisturizing drops.

It will not get better but it slows the progression down quite a bit. It can be

a rather painful condition at times as well as frustrating as often the vision

in the affected eye fluxuates quite a bit.

Nieder

kerataconus

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

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Share on other sites

Guest guest

My father has it. And I have several patients who have it as well.

It is a progressive thinning of the cornea (the clear tissue that covers the

iris), due to an imbalance of an enzyme (collagenase) in the cornea. The cornea

is mainly composed of collagen protein, and if it is broken down to rapidly (by

the collagenase) weak spots develop. The eye's intraocular pressure then causes

the cornea to bow out in these weak places. The result is an irregular

astigmatism (basically an irregular curvature on the cornea) that often cannot

be fully corrected by glasses. Rigid contact lenses can help correct the

vision, but do not have any effect on the course of the disease (unless they are

improperly fit--then can actually make it worse). If it progresses to the point

where contact lenses cannot be tollerated or scarring obscures the vision, then

a corneal transplant can be performed.

Down's syndrome is associatied with a higher incidence of keratoconus, but I

am not aware of any other associated syndromes. Also, people who have

keratoconus tend to have a lot of allergies (and they tend to rub their eyes

hard--as in they use their knuckles). Usually it is detected in young

adulthood (late teens-late twenties), the keratoconus progresses to a point and

then levels off. But some people can have a very aggressive keratoconus and

require corneal transplantation at an early age. The good news is that

keratoconus patients are among the most successful corneal graft recipients.

Supposedly there is a genetic component, although most of the patients I've

run across are the only ones in their family with it (I did have a mother and a

son with it though). My dad is the only one in my family with it. He is in his

mid 50s (diagnosed at age 30) and has excellent vision--he is 20/20 in each eye

with his contacts, and in glasses one eye is 20/25+ (slightly reduced) and the

other is 20/20.

(mom to Evan 9.5 months, and an optometrist)

simon howard wrote:

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

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Share on other sites

Guest guest

My father has it. And I have several patients who have it as well.

It is a progressive thinning of the cornea (the clear tissue that covers the

iris), due to an imbalance of an enzyme (collagenase) in the cornea. The cornea

is mainly composed of collagen protein, and if it is broken down to rapidly (by

the collagenase) weak spots develop. The eye's intraocular pressure then causes

the cornea to bow out in these weak places. The result is an irregular

astigmatism (basically an irregular curvature on the cornea) that often cannot

be fully corrected by glasses. Rigid contact lenses can help correct the

vision, but do not have any effect on the course of the disease (unless they are

improperly fit--then can actually make it worse). If it progresses to the point

where contact lenses cannot be tollerated or scarring obscures the vision, then

a corneal transplant can be performed.

Down's syndrome is associatied with a higher incidence of keratoconus, but I

am not aware of any other associated syndromes. Also, people who have

keratoconus tend to have a lot of allergies (and they tend to rub their eyes

hard--as in they use their knuckles). Usually it is detected in young

adulthood (late teens-late twenties), the keratoconus progresses to a point and

then levels off. But some people can have a very aggressive keratoconus and

require corneal transplantation at an early age. The good news is that

keratoconus patients are among the most successful corneal graft recipients.

Supposedly there is a genetic component, although most of the patients I've

run across are the only ones in their family with it (I did have a mother and a

son with it though). My dad is the only one in my family with it. He is in his

mid 50s (diagnosed at age 30) and has excellent vision--he is 20/20 in each eye

with his contacts, and in glasses one eye is 20/25+ (slightly reduced) and the

other is 20/20.

(mom to Evan 9.5 months, and an optometrist)

simon howard wrote:

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

Link to comment
Share on other sites

Guest guest

My father has it. And I have several patients who have it as well.

It is a progressive thinning of the cornea (the clear tissue that covers the

iris), due to an imbalance of an enzyme (collagenase) in the cornea. The cornea

is mainly composed of collagen protein, and if it is broken down to rapidly (by

the collagenase) weak spots develop. The eye's intraocular pressure then causes

the cornea to bow out in these weak places. The result is an irregular

astigmatism (basically an irregular curvature on the cornea) that often cannot

be fully corrected by glasses. Rigid contact lenses can help correct the

vision, but do not have any effect on the course of the disease (unless they are

improperly fit--then can actually make it worse). If it progresses to the point

where contact lenses cannot be tollerated or scarring obscures the vision, then

a corneal transplant can be performed.

Down's syndrome is associatied with a higher incidence of keratoconus, but I

am not aware of any other associated syndromes. Also, people who have

keratoconus tend to have a lot of allergies (and they tend to rub their eyes

hard--as in they use their knuckles). Usually it is detected in young

adulthood (late teens-late twenties), the keratoconus progresses to a point and

then levels off. But some people can have a very aggressive keratoconus and

require corneal transplantation at an early age. The good news is that

keratoconus patients are among the most successful corneal graft recipients.

Supposedly there is a genetic component, although most of the patients I've

run across are the only ones in their family with it (I did have a mother and a

son with it though). My dad is the only one in my family with it. He is in his

mid 50s (diagnosed at age 30) and has excellent vision--he is 20/20 in each eye

with his contacts, and in glasses one eye is 20/25+ (slightly reduced) and the

other is 20/20.

(mom to Evan 9.5 months, and an optometrist)

simon howard wrote:

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

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Share on other sites

Guest guest

There is one othe systemic association: mitral valve prolapse--I have no idea

what the relationship there is (sounds like a research project for me tomorrow).

--I'm impressed with how much you know about keratoconus (most people

have never even heard of it before!). The only thing I would disagree with you

on is that it isn't caused by the eyes drying out because the lids don't close

all the way. What you are describing is called lagophthalmos (the lids failing

to close), and over time the cornea will dry out and be prone to repeated

erosions (called exposure keratitis) and scarring. But the scarring is just

scarring--it isn't necessarily keratoconus. There are lots of things that can

cause scarring of the cornea--infections, foreign bodies, herpes--just to name a

few. In order to have keratoconus, there has to be a steep (usually

cone-shaped, but not always) area of the cornea. This steep area has to

correspond with a thin spot in the cornea.

(mom to Evan)

Nieder wrote:

Hi Simon,

Woohoo! I knew taking a course about the human eye and all its conditions would

come in handy!

Keratoconus is a condition in which may cause corneal scarring, is more common

in younger people, generally those in their teens or 20s. This disease which

usually affects both eyes, causes the cornea to lose its normal, smooth

watch-glass shape and becomes shaped like an ice cream cone. The conical

protrusion of the cornea causes considerable distortion of light. Eventually

thinking and scarring of the cornea tissue may take place. Corrections provided

by glasses are inadequate and soft contracts conform to the irregular shape of

the eyes. A rigid lens may slow down the progression of the disease. If the

disease progresses to the point where contacts no long give satisfactory vision,

surgery may be required.

I believe it is caused by eyelids not fully closing (in people with CHARGE). The

eye dries out and is exposed to air which leads to cornea scarring. This is what

I have in my left eye and it is treatable with just simple moisturizing drops.

It will not get better but it slows the progression down quite a bit. It can be

a rather painful condition at times as well as frustrating as often the vision

in the affected eye fluxuates quite a bit.

Nieder

kerataconus

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

Link to comment
Share on other sites

Guest guest

My father has it. And I have several patients who have it as well.

It is a progressive thinning of the cornea (the clear tissue that covers the

iris), due to an imbalance of an enzyme (collagenase) in the cornea. The cornea

is mainly composed of collagen protein, and if it is broken down to rapidly (by

the collagenase) weak spots develop. The eye's intraocular pressure then causes

the cornea to bow out in these weak places. The result is an irregular

astigmatism (basically an irregular curvature on the cornea) that often cannot

be fully corrected by glasses. Rigid contact lenses can help correct the

vision, but do not have any effect on the course of the disease (unless they are

improperly fit--then can actually make it worse). If it progresses to the point

where contact lenses cannot be tollerated or scarring obscures the vision, then

a corneal transplant can be performed.

Down's syndrome is associatied with a higher incidence of keratoconus, but I

am not aware of any other associated syndromes. Also, people who have

keratoconus tend to have a lot of allergies (and they tend to rub their eyes

hard--as in they use their knuckles). Usually it is detected in young

adulthood (late teens-late twenties), the keratoconus progresses to a point and

then levels off. But some people can have a very aggressive keratoconus and

require corneal transplantation at an early age. The good news is that

keratoconus patients are among the most successful corneal graft recipients.

Supposedly there is a genetic component, although most of the patients I've

run across are the only ones in their family with it (I did have a mother and a

son with it though). My dad is the only one in my family with it. He is in his

mid 50s (diagnosed at age 30) and has excellent vision--he is 20/20 in each eye

with his contacts, and in glasses one eye is 20/25+ (slightly reduced) and the

other is 20/20.

(mom to Evan 9.5 months, and an optometrist)

simon howard wrote:

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

Link to comment
Share on other sites

Guest guest

My father has it. And I have several patients who have it as well.

It is a progressive thinning of the cornea (the clear tissue that covers the

iris), due to an imbalance of an enzyme (collagenase) in the cornea. The cornea

is mainly composed of collagen protein, and if it is broken down to rapidly (by

the collagenase) weak spots develop. The eye's intraocular pressure then causes

the cornea to bow out in these weak places. The result is an irregular

astigmatism (basically an irregular curvature on the cornea) that often cannot

be fully corrected by glasses. Rigid contact lenses can help correct the

vision, but do not have any effect on the course of the disease (unless they are

improperly fit--then can actually make it worse). If it progresses to the point

where contact lenses cannot be tollerated or scarring obscures the vision, then

a corneal transplant can be performed.

Down's syndrome is associatied with a higher incidence of keratoconus, but I

am not aware of any other associated syndromes. Also, people who have

keratoconus tend to have a lot of allergies (and they tend to rub their eyes

hard--as in they use their knuckles). Usually it is detected in young

adulthood (late teens-late twenties), the keratoconus progresses to a point and

then levels off. But some people can have a very aggressive keratoconus and

require corneal transplantation at an early age. The good news is that

keratoconus patients are among the most successful corneal graft recipients.

Supposedly there is a genetic component, although most of the patients I've

run across are the only ones in their family with it (I did have a mother and a

son with it though). My dad is the only one in my family with it. He is in his

mid 50s (diagnosed at age 30) and has excellent vision--he is 20/20 in each eye

with his contacts, and in glasses one eye is 20/25+ (slightly reduced) and the

other is 20/20.

(mom to Evan 9.5 months, and an optometrist)

simon howard wrote:

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

Link to comment
Share on other sites

Guest guest

My father has it. And I have several patients who have it as well.

It is a progressive thinning of the cornea (the clear tissue that covers the

iris), due to an imbalance of an enzyme (collagenase) in the cornea. The cornea

is mainly composed of collagen protein, and if it is broken down to rapidly (by

the collagenase) weak spots develop. The eye's intraocular pressure then causes

the cornea to bow out in these weak places. The result is an irregular

astigmatism (basically an irregular curvature on the cornea) that often cannot

be fully corrected by glasses. Rigid contact lenses can help correct the

vision, but do not have any effect on the course of the disease (unless they are

improperly fit--then can actually make it worse). If it progresses to the point

where contact lenses cannot be tollerated or scarring obscures the vision, then

a corneal transplant can be performed.

Down's syndrome is associatied with a higher incidence of keratoconus, but I

am not aware of any other associated syndromes. Also, people who have

keratoconus tend to have a lot of allergies (and they tend to rub their eyes

hard--as in they use their knuckles). Usually it is detected in young

adulthood (late teens-late twenties), the keratoconus progresses to a point and

then levels off. But some people can have a very aggressive keratoconus and

require corneal transplantation at an early age. The good news is that

keratoconus patients are among the most successful corneal graft recipients.

Supposedly there is a genetic component, although most of the patients I've

run across are the only ones in their family with it (I did have a mother and a

son with it though). My dad is the only one in my family with it. He is in his

mid 50s (diagnosed at age 30) and has excellent vision--he is 20/20 in each eye

with his contacts, and in glasses one eye is 20/25+ (slightly reduced) and the

other is 20/20.

(mom to Evan 9.5 months, and an optometrist)

simon howard wrote:

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

Link to comment
Share on other sites

Guest guest

My father has it. And I have several patients who have it as well.

It is a progressive thinning of the cornea (the clear tissue that covers the

iris), due to an imbalance of an enzyme (collagenase) in the cornea. The cornea

is mainly composed of collagen protein, and if it is broken down to rapidly (by

the collagenase) weak spots develop. The eye's intraocular pressure then causes

the cornea to bow out in these weak places. The result is an irregular

astigmatism (basically an irregular curvature on the cornea) that often cannot

be fully corrected by glasses. Rigid contact lenses can help correct the

vision, but do not have any effect on the course of the disease (unless they are

improperly fit--then can actually make it worse). If it progresses to the point

where contact lenses cannot be tollerated or scarring obscures the vision, then

a corneal transplant can be performed.

Down's syndrome is associatied with a higher incidence of keratoconus, but I

am not aware of any other associated syndromes. Also, people who have

keratoconus tend to have a lot of allergies (and they tend to rub their eyes

hard--as in they use their knuckles). Usually it is detected in young

adulthood (late teens-late twenties), the keratoconus progresses to a point and

then levels off. But some people can have a very aggressive keratoconus and

require corneal transplantation at an early age. The good news is that

keratoconus patients are among the most successful corneal graft recipients.

Supposedly there is a genetic component, although most of the patients I've

run across are the only ones in their family with it (I did have a mother and a

son with it though). My dad is the only one in my family with it. He is in his

mid 50s (diagnosed at age 30) and has excellent vision--he is 20/20 in each eye

with his contacts, and in glasses one eye is 20/25+ (slightly reduced) and the

other is 20/20.

(mom to Evan 9.5 months, and an optometrist)

simon howard wrote:

Hi all

I seem to be constantly struggling to keep up with the listserve (doesn't

help with both Flo and I on it). A couple of weeks ago I was talking to

another parent in the UK who had rung me to ask if I had come across another

person with CHARGE who had developed Keratacomus.

I told her I would ask the experts! From what I have very briefly read about

this eye condition (the thinning and distorting of the cornea) I recall that

it may have mentioned here before although not using this particular word.

Do any of you know anyone that has developed this condition?

Simon

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