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After Neurofibromatosis Diagnosis: What Do You Need to Do?

Identification of the genes for neurofibromatosis (NF)--NF-1 or NF-2--offers tremendous hope for the future. For instance, identification of the NF-1 gene has helped us understand how tumors in NF-1 form. As we understand more about the gene, we hope to be able to predict and control the problems caused by the abnormal gene.

While there is no cure for NF at the present time, there are many things that you can do that will make a significant difference in your life or the lives of you children.

Remember, if your child has NF, you are your child’s protector. If you, yourself, are affected, you must be your own advocate as well. This means that you must be sure that you talk to your doctor about any new problems or concerns.

There are also many people besides your doctor that you can rely on for help with NF. They include members of your local NF support group, genetic counselors, teachers, and psychologists.

Learn About NF

Because many of the problems in NF are rare, even among people with NF, most doctors will not have had enough experience with NF to detect or successfully treat all of them. Successful treatment often depends on having a cooperative relationship between your local physician and other physicians in NF programs at major medical centers.

The best treatment also depends on your learning about NF so that you can understand what problems you may expect and bring them to the attention of your doctor. If you notice changes, call the 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.

Work with Your Doctors

It is important to get the advice of a doctor who treats many patients with NF. 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. You may also want to 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.

Two brothers smiling. Jonathon and Kevin are identical twins--both have NF. They love baseball and being in the Boy Scouts. The boys say NF hasn't stopped them from doing anything.

Once a diagnosis of NF has been made, it is important to begin a careful, organized program to spot any changes, which may be due to NF and to keep good records about these problems. 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.

Evaluate Your Family

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 because some people have feelings of guilt or shame associated with having 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 had NF and you are sure that neither of the parents is affected, then the chance of having another child with NF is very small.

The best way of determining if someone has NF is by careful physical examination, although blood tests may eventually be available. You can use this information in planning a family. You may want to discuss this with 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.

Talk About Your Concerns

Don’t be afraid to talk about NF in your family. You may also want to talk to your friends about your concerns. Be prepared for the possibility that your friends or family may not be as understanding or as supportive as you might hope. They may not be ready to talk or they may not want to believe there is a problem or may not 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. 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. Offer information about NF to other people, as it seems necessary. You may also need to be careful not to overemphasize NF so that affected family members 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. They are important advocates for patients.




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