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.

The last sentence is very true, my opinion - as patient - is the same.
"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 (..)"

Yes, this is a real issue imho. But showing and explaining statistics for patients might help.
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