Without a doubt, communication between patient and doctor is an extremely important issue. All too often, doctors and patients fail to communicate effectively. They go their separate ways after office visits, each sometimes unaware of the other's thoughts and concerns.

Here are ten of the most common miscommunications between people with epilepsy and their doctors:

1. Need to understand the causes of epilepsy: Doctors sometimes wrongly assume that the patient understands the causes of epilepsy. Many people with newly diagnosed epilepsy have difficulty understanding why they have this disorder. They may be frightened at first. They may be given too much information to digest. But once people understand why they may have epilepsy, they can begin to understand the various treatment options.
2. Need to understand seizures and how to deal with them: Many people with epilepsy are frightened by their seizures and need to be reassured that seizure medicines and other treatments are available to help them. Education is key for people with epilepsy and their families, because society’s lack of understanding about the many different types of seizures is one of their biggest problems.
3. Need to understand how epilepsy can affect daily life: Most people with epilepsy lead outwardly normal lives. About 80% can be significantly helped by modern treatments. Some go months or years between seizures. But epilepsy can and does affect daily life for people with epilepsy, their families, and their friends. Sometimes people with epilepsy have poor self-esteem, and at times they may be depressed over their condition. It is essential that doctors and people with epilepsy communicate with each other, sharing information and concerns about how epilepsy can affect everyday living.
4. Need to understand treatment strategies: Once epilepsy is diagnosed, the doctor can begin a schedule of treatments that are appropriate for the individual. Many people with epilepsy do not understand why a particular treatment has been prescribed for them. Doctors need to carefully explain all the reasons why the treatment is right for that person.
5. Need to ask questions: Both the doctor and the person with epilepsy can be guilty of this offense. People with epilepsy need to ask questions until they are sure they understand what the doctor is saying. Failure to ask enough questions about epilepsy and treatments can have severe consequences. Doctors also need to ask questions, both to provide better care and to make sure the person with epilepsy understands what's going on.
6. Need to help children understand epilepsy: Too many parents and doctors fail to help children understand the basics of epilepsy. Children need to be treated with honesty and respect, using language they understand. Children are curious by nature, and will usually respond with questions of their own once they have been told they have epilepsy. Parents and doctors must take the time to help the child understand what is happening, and help the child understand his or her own responsibilities.
7. Need to understand the special risks associated with epilepsy: Although most people with epilepsy lead full, active lives, they are at risk for injuries and accidents as a direct result of seizures. They need to learn about safety precautions that should be followed.
8. Need to understand about diets: Studies have shown that some children may experience fewer seizures if they maintain a strict diet rich in fats and low in carbohydrates. This unusual diet, called the "ketogenic diet," causes the body to break down fats instead of carbohydrates to survive. This diet can be complicated, so people who want to try it should seek advice from their doctor. Doctors need to make certain that people with epilepsy understand all aspects of it.
9. Need to ask about resources: There are many resources available to help people with epilepsy and their families understand epilepsy and how it affects their lives. Ask for additional information about epilepsy.
10. Need to understand how epilepsy can affect pregnancies: Pregnancy has unique challenges for women with epilepsy, and some women are concerned about whether they can become pregnant and have a healthy child. The risk that children of parents with epilepsy will develop epilepsy is only about 5%, unless the parent has a clearly hereditary form of the disorder. Talk with your doctor about these concerns.

Topic Editor: Steven C. Schachter, M.D.
Last Reviewed:12/22/06

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