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Once your child has been diagnosed with neurofibromatosis (NF), it is important to begin a careful, organized program to spot any changes which may be due to NF and to keep good records. Ask doctors for a copy of the examination report to keep for your own records. You may also want to keep copies of your X-rays or scans so that you can discuss them with different doctors. Make regular visits to the doctor as part of your routine.
While there is no cure for NF, you can do many things to make a significant difference in your or your child's life. Remember, if your child has NF, you are his or her protector. If you are affected, you must be your own advocate as well. This means you must be sure to talk to your doctor about any new problems or concerns. You can also rely on help with NF from members of your local NF support group, genetic counselors, teachers and psychologists.
The best treatment often depends on having a cooperative relationship between the physicians involved in your care.
We recommend following these guidelines:
Don’t hesitate to ask your doctor about his or her experience with NF.
Do not be afraid to ask for a second opinion. Your family doctor should be willing to call an NF clinic to ask for advice.
Consult an NF clinic in a medical center on your own for advice. Doctors at an NF clinic can then work with your family doctor to provide you with the best care.
Educating yourself about NF will help you understand what to expect and when to bring issues to the attention of your doctor. If you notice changes, call your doctor and ask whether the problem could be due to NF. It is often much easier to treat the problems that occur in NF if they are detected early.
It is important to know whether other people in your immediate family have NF. Identifying who in a family is affected may be a sensitive and difficult issue, as some people experience feelings of guilt or shame with a genetic disorder. However, there are good reasons for knowing who has NF. If, for example, you have NF, then any of your children can have NF. On the other hand, if your child has NF and neither parent is affected, the chance of having another child with NF is very small.
You can use this information in planning a family and also may want to consult your doctor or a genetic counselor. Genetic counselors are trained to provide people with information about genetic disorders, family planning and the risk of passing on a disorder.
Don’t be afraid to talk about NF with your friends and family. Be prepared for the possibility they may not be as understanding or as supportive as you might hope. They may not be ready to talk, want to believe there is a problem or know what to say. Some family members may feel guilty or angry about having the disorder.
Unfortunately, there are some situations in which you will need to be cautious about discussing NF. Offer information about NF to other people as it seems necessary. Employers may discriminate against people with NF, even against parents of children with NF, because of potentially higher health insurance costs. Schools may be unsure how to treat a child with NF unless they are given specific directions. You may also need to be careful not to overemphasize NF so that affected family members don't feel different from the rest of the family. Remember, that the majority of people with NF can lead normal, functional lives.
Accepting that you or your child has NF may take time and it is important to understand that. Many other families have gone through similar problems. Local NF groups can be source of tremendous support and advice. There are NF support groups in many states. These organizations were formed by parents and patients to provide support, advice and information on dealing with many aspects of NF.