What is Marfan's syndrome?
Doctor Marfan was the first person to write about this syndrome. A syndrome is a group of problems that happen together. People who have Marfan's syndrome have too much stretch in their bodies. One of the proteins that builds their bodies does not work like other people's. Their joints are long. They are tall and have long fingers and toes. They may have problems with their heart, large blood vessels and bones as well.
The lenses of their eyes are not in the best place in their eyes. The lens of each eye needs to be centered behind the pupil to focus the light on the back of the eye. The lenses in the eyes of people who have Marfan's syndrome are "subluxated." That means that they are not right in the center of the eye. Sometimes the lenses move all the way to the back of the eyes of people who have Marfan's. Sometimes the lenses block the flow of water out of the inside of their eyes and cause glaucoma. You can read about glaucoma on this web site. The lenses of people who have Marfan's may also get cataracts. You can read about cataracts here.
People who have Marfan's have eyes that are long. Long eyes cause people to see better close up, and not well far away. This is called myopia, which you can read about on this web site. People who have long eyes also may have retinal detachments, another condition you can read about here. The eyes may be so long that the retinas cannot stretch across the back of them. When the retinas pull away from the eye, there is no way for visual information to get to the brain.
People who have Marfan's syndrome also have strabismus. This means that their eyes do not always move in the same directions as each other.
What kind of vision do people have who have Marfan's syndrome?
People who have Marfan's syndrome see best when things are close because of their extra long eyes. Things that are far away look blurry. If they have a retinal detachment, glaucoma or cataracts, they will also have the kind of vision people who have those problems have.
What will help you if you have Marfan's syndrome?
- There are many medicines and therapies to help you if you have Marfan's syndrome. Your doctor will be good at finding ways to help you.
- Wear glasses if they help you see better.
- Make things look bigger. The easy way to make things look bigger is to move them close to you or move yourself close to them. Use a bookstand to hold your book so that you can sit up to look at it up close. Maybe a magnifier will help you see things close to you. You can make print and pictures bigger on the computer or with a copy machine.
- A monocular telescope may help you see signs outside and the board in class. You can use it to see animals in the zoo and things in a museum.
- If bright light hurts your eyes, wear sunglasses and a hat with a dark brim outside. Try to get indoor lights that you can make dim or bright as you like.
- If you can only read really big print, you may want to learn braille. Using listening for learning will also be useful.
- If you bump into things and trip on things, you may want to learn to use a white cane.