Tuesday, February 21, 2006
A Common Keratoconus Story
The following is an article from a paper in the US:
Posted February 20, 2006
Threat of blindness leads ex-Packer to benefit
Blaise Winter knows his future may hold a cornea transplant and the former Packers defensive lineman says he is scared to death.
Winter, who will speak at a Prevent Blindness benefit Friday, was diagnosed with keratoconus more than 10 years ago. Keratoconus is a noninflammatory eye condition in which the normally round dome-shaped cornea progressively thins causing a cone-like bulge to develop. This results in significant visual impairment, according to the National Keratoconus Foundation.
"The cornea is the clear window of the eye and is responsible for refracting most of the light coming into the eye. Therefore, abnormalities of the cornea severely affect the way we see the world making simple tasks, like driving, watching TV or reading a book difficult," according to the foundation.
Glasses and soft contact lenses may be used to correct the mild nearsightedness and astigmatism that is caused in the early stages of keratoconus. As the disorder progresses and the cornea continues to thin and change shape, rigid gas-permeable contact lenses can be prescribed to correct the vision. In severe cases, a corneal transplant may be needed because of scarring, extreme thinning or contact-lens intolerance.
Winter said he first noticed problems when he was in high school. "I fought wearing glasses, and I never wore them for games. I was really excited when I was fitted with contacts." He comfortably wore the soft lenses as an athlete.
After a few years, the comfort faded, and he finally was diagnosed with keratoconus. "The only way to get a comfort level and address the problem was to get into hard lenses," he said.
At 44, he is aware that there is "always the outside worry that they can't force the eye into the right shape with glasses or contacts and I'll be in trouble. If I don't wear contacts, I'll walk into a wall or a door. I can't see my wife's face if she's two feet in front of me.
"I'm scared to death about this. I think no matter how often the cornea transplant procedure is done, I still don't want to hear a doctor say I'll need one."
His eyes have developed ulcers in the corners from wearing contacts so much, he said. "I wear contacts for 14 to 17 hours a day. It hurts, but I can't get home without them."
"I have two little boys. I want to see them — not just hear them or feel them — grow up. I want to continue to do my motivational work," Winter said. He is a motivational speaker living in Appleton.
Because it's not an ailment that people can see, he suffers privately with it. "I was born with a cleft palate. People can see my scar; my speech is a little different. But, people don't see eye problems.
"We have a tendency to take our vision for granted. It's tough to deal with. No one gives you sympathy. When I drop a contact on the floor, I panic. I can't see to find it. I always have to carry a spare set."
Winter is committed to Prevent Blindness on both the local and national levels.
"There are a lot of types of vision problems," he said. "People are suffering. I'm committed to getting people aware of different types of vision problems."
The fear of going blind of keratoconus is a huge issue for many of my patients. The issue lies in the fact that a keratoconic patient feels like they are always on a treadmill. Apart from regular eye exams sometimes every three months, the fear of losing lenses and of the lenses no longer fitting and being forced to do a corneal transplant is constantly on their minds. The best way to cope with this ongoing activity is to just accept it and trust that the practitioner treating them will always keep their interest at heart. Finding a practitioner that understands the issues associated with keratoconus is a matter of finding someone that sees many keratoconic patients.
Every keratoconic patient is unique in their own way, but if time is spent analysing the problems that come up, the overwhelming majority of problems have very satisfactory solutions.
If you are not seeing a keratoconic specialist just ask! You will find that most practitioners will only be too willing to help you find someone that can help you.
Posted February 20, 2006
Threat of blindness leads ex-Packer to benefit
Blaise Winter knows his future may hold a cornea transplant and the former Packers defensive lineman says he is scared to death.
Winter, who will speak at a Prevent Blindness benefit Friday, was diagnosed with keratoconus more than 10 years ago. Keratoconus is a noninflammatory eye condition in which the normally round dome-shaped cornea progressively thins causing a cone-like bulge to develop. This results in significant visual impairment, according to the National Keratoconus Foundation.
"The cornea is the clear window of the eye and is responsible for refracting most of the light coming into the eye. Therefore, abnormalities of the cornea severely affect the way we see the world making simple tasks, like driving, watching TV or reading a book difficult," according to the foundation.
Glasses and soft contact lenses may be used to correct the mild nearsightedness and astigmatism that is caused in the early stages of keratoconus. As the disorder progresses and the cornea continues to thin and change shape, rigid gas-permeable contact lenses can be prescribed to correct the vision. In severe cases, a corneal transplant may be needed because of scarring, extreme thinning or contact-lens intolerance.
Winter said he first noticed problems when he was in high school. "I fought wearing glasses, and I never wore them for games. I was really excited when I was fitted with contacts." He comfortably wore the soft lenses as an athlete.
After a few years, the comfort faded, and he finally was diagnosed with keratoconus. "The only way to get a comfort level and address the problem was to get into hard lenses," he said.
At 44, he is aware that there is "always the outside worry that they can't force the eye into the right shape with glasses or contacts and I'll be in trouble. If I don't wear contacts, I'll walk into a wall or a door. I can't see my wife's face if she's two feet in front of me.
"I'm scared to death about this. I think no matter how often the cornea transplant procedure is done, I still don't want to hear a doctor say I'll need one."
His eyes have developed ulcers in the corners from wearing contacts so much, he said. "I wear contacts for 14 to 17 hours a day. It hurts, but I can't get home without them."
"I have two little boys. I want to see them — not just hear them or feel them — grow up. I want to continue to do my motivational work," Winter said. He is a motivational speaker living in Appleton.
Because it's not an ailment that people can see, he suffers privately with it. "I was born with a cleft palate. People can see my scar; my speech is a little different. But, people don't see eye problems.
"We have a tendency to take our vision for granted. It's tough to deal with. No one gives you sympathy. When I drop a contact on the floor, I panic. I can't see to find it. I always have to carry a spare set."
Winter is committed to Prevent Blindness on both the local and national levels.
"There are a lot of types of vision problems," he said. "People are suffering. I'm committed to getting people aware of different types of vision problems."
The fear of going blind of keratoconus is a huge issue for many of my patients. The issue lies in the fact that a keratoconic patient feels like they are always on a treadmill. Apart from regular eye exams sometimes every three months, the fear of losing lenses and of the lenses no longer fitting and being forced to do a corneal transplant is constantly on their minds. The best way to cope with this ongoing activity is to just accept it and trust that the practitioner treating them will always keep their interest at heart. Finding a practitioner that understands the issues associated with keratoconus is a matter of finding someone that sees many keratoconic patients.
Every keratoconic patient is unique in their own way, but if time is spent analysing the problems that come up, the overwhelming majority of problems have very satisfactory solutions.
If you are not seeing a keratoconic specialist just ask! You will find that most practitioners will only be too willing to help you find someone that can help you.
Friday, February 17, 2006
Corneal Transplantation for Keratoconus
A corneal transplant has been the mainstay of treatment for keratoconus if contact lenses fail due to discomfort or unsatisfactory visual quality. I found an interesting article a few days ago about an anaesthetist in the UK, who finally decided to have a corneal transplant at 50.
Follow the link to the Evening Times newspaper that is published in the UK and read the story. It brings up some interesting points that are worth discussing.
http://www.eveningtimes.co.uk/hi/news/5049013.html
Today another article about a minister of the church in Scotland, who allowed himself to go blind because:
"I waited until I had nothing to lose and everything to gain." The article follows:
I was blind . . now i can see
A BLIND minister has said an emotional thank you to the family who gave him his sight back. Port Glasgow man Andrew MacLean suffers from a rare eye condition which left him in need of a cornea transplant. Almost two years after undergoing surgery, the St Andrew's minister was able to see. New laws have been pushed through parliament to increase the number of organ donors in Scotland. Reverend MacLean said: "I want to thank the family of my donor. "If someone has just lost a loved one tragically in an accident it is an amazing gesture to give someone else the gift, in my case of my sight, and for others the gift of life." In September last year Reverend MacLean had vision out of his right eye for the first time in over three years. Nearly two years before he had undergone the surgery to give him sight. Andrew will need another transplant in the future to give him vision in his left eye. The father-of-two, who spent most of his life wearing contact lenses to correct his condition known as keratoconus which in extreme cases like Andrew's can make you go blind. He admitted delaying surgery until his vision was gone completely because he was scared to go ahead with a transplant. Andrew added: "I waited until I had nothing to lose and everything to gain." The surgery has given him a new hunger for life. Mr MacLean said: "I still can't believe it. I look out and appreciate what an extraordinary, beautiful world we live in. Before I lost my sight I didn't realise just how beautiful it was." Although he is over the moon to be able to see a whole new world, Mr MacLean says he does not regret for one minute being blind. He said: "I do not regret having a disability. People are enormously kind. When I was waiting for a bus I used to stop drivers to ask them where they were going. I didn't always have a stick but they were always great with me." Mr MacLean also recalls a group of football fans taking time out from celebrating a victory for their team to help him down a hill. Earlier this month a new bill was introduced that means relatives of a registered organ donor will no longer have the right to veto the person's wishes.
This story appeared in the Greenock Telegraph on Sat, 18 Feb, 2006
These sorts of cases really do not need to happen, even here in NSW where corneal transplant tissue is difficult to come by. Once contact lenses have failed (and this only occurs in about 5% of cases) the contact lens specialist normally has a good relationship with a number of expert corneal transplant surgeons and therefore a prompt transpant normally can be promptly organised. Remember corneal transplants very rarely fail.
Follow the link to the Evening Times newspaper that is published in the UK and read the story. It brings up some interesting points that are worth discussing.
http://www.eveningtimes.co.uk/hi/news/5049013.html
Today another article about a minister of the church in Scotland, who allowed himself to go blind because:
"I waited until I had nothing to lose and everything to gain." The article follows:
I was blind . . now i can see
A BLIND minister has said an emotional thank you to the family who gave him his sight back. Port Glasgow man Andrew MacLean suffers from a rare eye condition which left him in need of a cornea transplant. Almost two years after undergoing surgery, the St Andrew's minister was able to see. New laws have been pushed through parliament to increase the number of organ donors in Scotland. Reverend MacLean said: "I want to thank the family of my donor. "If someone has just lost a loved one tragically in an accident it is an amazing gesture to give someone else the gift, in my case of my sight, and for others the gift of life." In September last year Reverend MacLean had vision out of his right eye for the first time in over three years. Nearly two years before he had undergone the surgery to give him sight. Andrew will need another transplant in the future to give him vision in his left eye. The father-of-two, who spent most of his life wearing contact lenses to correct his condition known as keratoconus which in extreme cases like Andrew's can make you go blind. He admitted delaying surgery until his vision was gone completely because he was scared to go ahead with a transplant. Andrew added: "I waited until I had nothing to lose and everything to gain." The surgery has given him a new hunger for life. Mr MacLean said: "I still can't believe it. I look out and appreciate what an extraordinary, beautiful world we live in. Before I lost my sight I didn't realise just how beautiful it was." Although he is over the moon to be able to see a whole new world, Mr MacLean says he does not regret for one minute being blind. He said: "I do not regret having a disability. People are enormously kind. When I was waiting for a bus I used to stop drivers to ask them where they were going. I didn't always have a stick but they were always great with me." Mr MacLean also recalls a group of football fans taking time out from celebrating a victory for their team to help him down a hill. Earlier this month a new bill was introduced that means relatives of a registered organ donor will no longer have the right to veto the person's wishes.
This story appeared in the Greenock Telegraph on Sat, 18 Feb, 2006
These sorts of cases really do not need to happen, even here in NSW where corneal transplant tissue is difficult to come by. Once contact lenses have failed (and this only occurs in about 5% of cases) the contact lens specialist normally has a good relationship with a number of expert corneal transplant surgeons and therefore a prompt transpant normally can be promptly organised. Remember corneal transplants very rarely fail.
Thursday, February 16, 2006
Intacs
Yesterday I had a patient that enquired about a relatively new procedure called "Intacs" for keratoconus. Today I see the following article:
"Cutting hair for a worthy cause
Moxie hairdresser sets up fundraisers for a friend in need
By John C. Ensslin, Rocky Mountain News February 13, 2006
Erynn Simone looked across the room at Moxie Hair Co. in Denver, where a few feet away Talie Ayers, one of her childhood friends, was straightening a young woman's jet-black hair.
Simone, 22, could not see Ayers, nor the young woman.
That was why Ayers and six other hair stylists were working on a Sunday when the Capitol Hill hair salon normally would have been closed.
Simone is gradually losing her eyesight to keratoconus, an eye condition in which the normally dome- shaped cornea thins, causing a cone-like bulge of the cornea and blurred vision.
On Friday, Simone is scheduled to undergo a procedure to correct the condition. She will receive Intacs, which according to the National Keratoconus Foundation's Web site, are trademark prescription inserts approved by the Food and Drug Administration in July 2004.
Intacs are micro-thin, semi-circular plastic rings that are inserted into the mid-layer of the cornea, in an attempt to flatten it and improve vision.
The relatively new procedure will cost Simone about $7,000 and it is not approved by her medical insurance. So on Sunday, the hair stylists set to work, hoping to raise as much as they can toward the cost.
"Without the fundraiser, I probably wouldn't have the option of doing it. There's no way I would have the money," said Simone, who teaches environmental education in an after-school program at the Wild Bear Center for Nature Discovery in Nederland.
Ayers, who grew up with Simone in Three Rivers, Mich., had to convince her friend to let the hair salon do the fundraiser.
"I've just known her for so long," Ayers said. "If I could do anything to help her out, I would do it."
Just the facts on keratoconus
• Who gets keratoconus?
Researchers estimate the disease affects one in 2,000 people.
• Symptoms?
Subtle vision changes in early stages to bulging eyes in later stages.
• Are both eyes affected?
Yes, in about 90 percent of keratoconus cases. "
Intacs was first developed as an alternative for low prescription laser eye surgery. This was appealing at the time as it promised to be a reversble procedure if it did not work. From what I can understand it really did not take off as laser proved to be a better option. A few years back Intacs was first used to treat keratoconus with mixed results. The latest peer reviewed paper that has been published is:
Kanellopoulos AJ, Pe LH, Perry HD, Donnenfeld ED.
Modified intracorneal ring segment implantations (INTACS) for the management of moderate to advanced keratoconus: efficacy and complications.Cornea. 2006 Jan;25(1):29-33.
The conclusion was:
"The procedure appears to be effective in improving UCVA and BSCVA of patients with clinical keratoconus. In our small study group, however, there were significant (6/20) postoperative problems with regards to thinning and ring exposure."
Essentially what the take home message is that Intacs can be effective in allowing to get better vision from spectacles, which in itself is a great thing, but approximately 1/3 of the patients had significant complications 3 - 6 months later. I can guarantee that the group of ophthalmologists that have published this study are some of the best in the world.
The young lady in the article above that is having the hair cut fund raiser is hoping that this procedure will rid her of her keratoconus. I hope she has been advised accurately of the success rate of this technique.
We have just started using Intacs in Australia just recently. I am sure it will have a role in the management of keratoconus. At present I can see it helping patients with low levels of keratoconus or patients that cannot be fitted with contact lenses but do not want to have a corneal transplant. Stay tuned and I am sure more information will be coming out soon.
"Cutting hair for a worthy cause
Moxie hairdresser sets up fundraisers for a friend in need
By John C. Ensslin, Rocky Mountain News February 13, 2006
Erynn Simone looked across the room at Moxie Hair Co. in Denver, where a few feet away Talie Ayers, one of her childhood friends, was straightening a young woman's jet-black hair.
Simone, 22, could not see Ayers, nor the young woman.
That was why Ayers and six other hair stylists were working on a Sunday when the Capitol Hill hair salon normally would have been closed.
Simone is gradually losing her eyesight to keratoconus, an eye condition in which the normally dome- shaped cornea thins, causing a cone-like bulge of the cornea and blurred vision.
On Friday, Simone is scheduled to undergo a procedure to correct the condition. She will receive Intacs, which according to the National Keratoconus Foundation's Web site, are trademark prescription inserts approved by the Food and Drug Administration in July 2004.
Intacs are micro-thin, semi-circular plastic rings that are inserted into the mid-layer of the cornea, in an attempt to flatten it and improve vision.
The relatively new procedure will cost Simone about $7,000 and it is not approved by her medical insurance. So on Sunday, the hair stylists set to work, hoping to raise as much as they can toward the cost.
"Without the fundraiser, I probably wouldn't have the option of doing it. There's no way I would have the money," said Simone, who teaches environmental education in an after-school program at the Wild Bear Center for Nature Discovery in Nederland.
Ayers, who grew up with Simone in Three Rivers, Mich., had to convince her friend to let the hair salon do the fundraiser.
"I've just known her for so long," Ayers said. "If I could do anything to help her out, I would do it."
Just the facts on keratoconus
• Who gets keratoconus?
Researchers estimate the disease affects one in 2,000 people.
• Symptoms?
Subtle vision changes in early stages to bulging eyes in later stages.
• Are both eyes affected?
Yes, in about 90 percent of keratoconus cases. "
Intacs was first developed as an alternative for low prescription laser eye surgery. This was appealing at the time as it promised to be a reversble procedure if it did not work. From what I can understand it really did not take off as laser proved to be a better option. A few years back Intacs was first used to treat keratoconus with mixed results. The latest peer reviewed paper that has been published is:
Kanellopoulos AJ, Pe LH, Perry HD, Donnenfeld ED.
Modified intracorneal ring segment implantations (INTACS) for the management of moderate to advanced keratoconus: efficacy and complications.Cornea. 2006 Jan;25(1):29-33.
The conclusion was:
"The procedure appears to be effective in improving UCVA and BSCVA of patients with clinical keratoconus. In our small study group, however, there were significant (6/20) postoperative problems with regards to thinning and ring exposure."
Essentially what the take home message is that Intacs can be effective in allowing to get better vision from spectacles, which in itself is a great thing, but approximately 1/3 of the patients had significant complications 3 - 6 months later. I can guarantee that the group of ophthalmologists that have published this study are some of the best in the world.
The young lady in the article above that is having the hair cut fund raiser is hoping that this procedure will rid her of her keratoconus. I hope she has been advised accurately of the success rate of this technique.
We have just started using Intacs in Australia just recently. I am sure it will have a role in the management of keratoconus. At present I can see it helping patients with low levels of keratoconus or patients that cannot be fitted with contact lenses but do not want to have a corneal transplant. Stay tuned and I am sure more information will be coming out soon.
Introduction
Hi my name is Jim Kokkinakis. I am an optometrist in the CBD of Sydney and one of my specialties is a condition called keratoconus or conical cornea.
This condition is not that common ie it affects approximately 1/2000 of the general population. Over the years I have seen many hundreds of keratoconic patients, whereas a general optometrist will see approximately one keratoconic patient per year.
The main purpose of this blog is to raise the level of information on this very misunderstood condition and hopefully lower the level of concern that commonly is perpetuated by misinformation.
I invite you to regularly come back and I promise to keep updating and discuss the information that I post.
Keratoconus is NOT a blinding condition! It certainly can be very inconvenient to treat some times but the reality is that the overwhelming majority of people that exhibit this condition will continue life normally and be productive members of society.
This condition is not that common ie it affects approximately 1/2000 of the general population. Over the years I have seen many hundreds of keratoconic patients, whereas a general optometrist will see approximately one keratoconic patient per year.
The main purpose of this blog is to raise the level of information on this very misunderstood condition and hopefully lower the level of concern that commonly is perpetuated by misinformation.
I invite you to regularly come back and I promise to keep updating and discuss the information that I post.
Keratoconus is NOT a blinding condition! It certainly can be very inconvenient to treat some times but the reality is that the overwhelming majority of people that exhibit this condition will continue life normally and be productive members of society.
