While not all NF patients suffer from the most severe symptoms, all live their lives with the uncertainty of not knowing whether they will be moderately affected or severely affected because NF is a highly variable and progressive disorder.


No cure exists for neurofibromatosis other than surgery. Most tumors cannot be totally removed and may grow back.


After Neurofibromatosis Diagnosis: What do you need to do?

Identification of the genes for Neurofibromatosis (NF) NF-1 and 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 your children

Remember that 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. Then include members of your local NF support group, genetic counselors, teachers, and psychologists.

Learning About Neurofibromatosis

Because many of the problems in NF are rare, even among people with NF, most doctors will not have had enough experiences 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 your can understand what problems you may expect and bring them to the attention of your doctors. If you notice changes, call the doctor and ask whether the problem could be associated with NF It is often much easier to treat the problems that occur in NF if detected early.

Talk to your doctor about your problems and concerns. Write your questions down. Make sure that your doctor answers your questions and that you understand the answers.

About NF1

The most common form of Neurofibromatosis (NF) is NF1. It is sometimes referred to as peripheral Neurofibromatosis or von Recklinghausen’s disease. People with NF-1 generally have brown oval or circular spots on the skin called café-au-lait spots and freckles under the arm or in the groin area. Benign soft tumors or lumps in or under the skin called neurofibroma and brownish-red spots in the iris, the colored part of the eye, called Lisch nodules are present in most people.

NF-1 frequently causes learning difficulties in children. It may affect physical growth, especially long bones and spine. In addition, tumors may form along nerves anywhere in the body.

Some signs of NF-1 are usually visible within the first year of life. Other signs of NF-1 may develop as people get older. For example, Lisch nodules of the iris are unusual in young children but commonly develop in teenagers and adults. Neurofibromas frequently appear or grow during the hormonal changes which occur in teenage years and during pregnancy. It is important to remember, that while the problems caused by NF-1 can be serious, NF-1 usually does not keep people who have it from living a normal and productive life.

Some people with NF-1 will only gave café-au-lait spots and neurofibromas, but others may have more difficult problems. At the present time, it is impossible to predict what kinds of problems an individual will have. No two people will be affected in exactly the same way, even within the same family.

NF-1 can cause café-au-lait spots, Benign tumors of the skin, or tumors below the skin affecting internal organs. Some people will have only mild problems while other people will be more severely affected. NF-1 affects people differently even within the same family.