Alstrom Syndrome

What is Alstrom syndrome?

A syndrome is a problem with more than one part. Alstrom syndrome has a part that is in the eyes and other parts as well. The eyes of people who have Alstrom syndrome are hurt by too much light. There is a kind of skin in the back of each eye called the retina. The retina holds the nerves that get the light from the pupil. They are called the rods and cones. They send the vision messages to the brain. When people have Alstrom syndrome, the rods and cones stop working. The people can see less and less because the rods and cones stop working as they grow older. They have time to get used to seeing less because their vision changes slowly. It is like getting taller. Children get used to being taller because it does not happen all at once.

The eyes of people who have Alstrom syndrome move quickly even when they don't want to move them. This is called nystagmus.

The other parts of Alstrom syndrome are not in the eyes. Children who have Alstrom syndrome may be heavier than other children. They cannot help it. It is part of Alstrom syndrome. When they are adults, they may not look as heavy. They are often shorter than other people in their families.

People who have Alstrom syndrome may have a disease called diabetes mellitus. People who have diabetes mellitus need to talk to their doctors about the right food to eat.

Some people who have Alstrom syndrome have other problems, too. They have a hard time hearing. The hearing loss usually starts when they are ten years old. It is a slow loss so they have time to get used to it. They may have a hard time feeling things with their hands as well. Some of them have heart problems.

People who have Alstrom syndrome are usually just as smart as the other people in their families.

What causes Alstrom syndrome?

Alstrom syndrome is an inherited eye condition. That means that a baby is born with it even though it did not show right away. When people have a baby, the baby's body has many things that the parents' bodies have. For example, a mother may have curly hair, and her baby may have curly hair just like hers. The father may have brown eyes, and his child will probably have brown eyes, too. But it is possible that two parents who have curly hair could have a baby with straight hair. Two parents who have brown eyes could have a baby who has blue eyes. They have the gene that makes straight hair and blue eyes hidden in their bodies.

Parents who have children who have achromatopsia may not have known that they have Alstrom syndrome in their bodies. It was hidden. They may not know that Alstrom syndrome is in their body cells until they have a child who has it. Or they may remember that someone else in the family had Alstrom syndrome.

What kind of vision do people have who have Alstrom syndrome?

People who have Alstrom syndrome have trouble seeing in bright light. It hurts their eyes. It makes things blurry. Bright light makes them want to close their eyes. They may have trouble seeing things that are far away.

What will help you if you have Alstrom syndrome?

1. Wear sunglasses and hat with a dark brim when it is bright out. You may even want to wear sunglasses and a hat inside. Try it, and see if it helps you see better.
2. Wear glasses from your doctor if they help you see better.
3. Wear hearing aids from you doctor if they help you hear better. You may want to use an FM system at school to hear the teacher. The FM system has a receiver for you to wear and a microphone for the teacher to wear. Ask the teacher of students who are hard of hearing if you can try one.
4. Sit near the main thing that is happening in class. If the teacher is in the front of the class, sit near the front. You will be able to see and hear better.
5. Sit and stand so that the light is behind you or next to you. Do not sit where the light is in front of you.
6. Learn braille for reading. Use listening for learning as well.
7. Use a white cane to help you find your way. It will also help you keep from bumping into things and from tripping. People will know that you have a visual impairment. They will know what kind of help to offer you.
8. Let people know if something hurts your eyes or your ears. Ask to move away from things that bother you.

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