While NF-1 can affect almost any organ in the body, many people have only a few difficulties. As many as 40 to 60 percent of children have short attention span, hyperactivity or some difficulty learning in school. Problems with visual perception are common and may make spelling and math more difficult. Children with these problems can be helped to be successful in school. Headaches and difficulties with hearing are also common in NF-1 and may affect schoolwork.
NF-1 frequently affects growth. People with NF-1 may be shorter or have slightly larger heads than the average person. NF-1 may also affect the growth of bones. Some will have actual shrinkage of a bone, bending or fracture of a long bone that won’t heal, called pseudarthrosis. Others may have curvature of the spine, called scoliosis.
NF-1 also causes tumors to form in different parts of the body. Small tumors on or below the surface of the skin, called neurofibroma, are present in most people. Some people with NF-1 have tumors or growths that involve the skin and deeper tissues, including the nerves, called plexiform neurofibroma. These growths can sometimes be large and change the normal shape of a part of the body or can affect internal organs. Occasionally, cancer can form in a plexiform neurofibroma.
NF-1 may also affect the brain. Bright spots are frequently seen on brain scans. The nerves to the eye may be abnormally large, called optic gloom. In a small number of people, NF-1 causes brain tumors.
Having NF-1 means there will be changes in your body which nobody can predict. Because doctors cannot tell in advance what will happen to each person and because many of the problems are rare, it is important for you to learn all that you can about NF.