What is Lawrence-Moon-Bardet-Biedl syndrome?
Lawrence, Moon, Bardet and Biedl are the last names of four doctors who first wrote about this set of problems. They saw that sometimes people who have an eye problem called retinitis pigmentosa have other problems. The other problems in Lawrence-Moon-Bardet-Biedl Syndrome are being heavier than other people, having smaller private parts, having trouble learning some things, having trouble moving arms and legs, having extra fingers and having kidney trouble. People who have Lawrence-Moon-Bardet-Biedl Syndrome do not always have all of these problems. People who have Lawrence-Moon-Bardet-Biedl Syndrome may not talk about all of these problems. They think of them as private. They talk about these problems to their doctors and families only.
What causes Lawrence-Moon-Bardet-Biedl Syndrome?
Lawrence-Moon-Bardet-Biedl is an inherited condition. That means that a baby is born with it. 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 Lawrence-Moon-Bardet-Biedl may not have known that they have it in their bodies. It was hidden. They may not have known that it was in their body cells until they had a child who has it. Or they may remember that someone else in the family had Lawrence-Moon-Bardet-Biedl.
What kind of vision do people have who have Lawrence-Moon-Bardet-Biedl Syndrome?
People who have Lawrence-Moon-Bardet-Biedl Syndrome have retinitis pigmentosa or RP. That means that the outside part of their vision is missing. They may see color and details in good light. They have trouble seeing anything in dim light. They may not notice things moving to the side. They may bump into things or trip on things. They do not see things to the side or down below or up above. Sometimes they feel like they are looking through a tube or a tunnel. People call this “tunnel vision.”
People who have retinitis pigmentosa sometimes have myopia as well. They can see things better when they are up close.
It may take longer for people who have retinitis pigmentosa to see again when they go from bright light to dim light or from dim light to bright light.
People who have retinitis pigmentosa lose vision as they grow up. This loss is slow so that they have time to get used to it.
What will help you if you have retinitis pigmentosa?
1. Glasses may be helpful. Your doctor can tell you what glasses are right. You can have them made just for you.
2. Wear sunglasses and a hat in bright light. It will be easier to go into dimmer light if you do.
3. You may want to 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, with a CCTV or with a copy machine. Do not make things too big. If they are too big, they will be outside the “tunnel” that you see in.
4. You may want to make things look smaller. The easy way to make things look smaller is too move away from them or to move them away from you. You can also use a computer, a CCTV or a copy machine to make pictures and print smaller.
If you hold a monocular telescope or a pair of binoculars up to your eyes backwards, things will look smaller and you may see a wider view. Try it with a telescope that usually makes things two to four times bigger.
5. Learn to use a white cane so that you will not bump into things or trip. At night or in a dark place it will help a lot to have a white cane.
6. You may want to learn braille. If you lose more vision, you will still be able to read. You can read braille all of your life.
7. A monocular telescope held in the usual way may help you see things far away. It may help you read signs outside and the board at school.