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16 | InTouch SPRING 2026 Neurofibromatosis type 1 (NF1) is an inherited condition causing tumours on nerve tissue anywhere in the body and a variety of other effects. It occurs in 1 in 3000 people and affects boys and girls equally. What is Neurofibromatosis type 1? YOUR CONDITION IN REVIEW Features of Neurofibromatosis type 1 In 1882 a German pathologist called Freidrich Daniel von Recklinghausen first characterised the tumours in neurofibromas which consist of mingling of nerve cells and fibrous tissue. The main features include six or more café au lait (CAL) spots on the skin, freckling in the armpits or groin area, brown spots on the irises (Lisch nodules) and lumps under the skin (neurofibroma). NF1 is sometimes referred to as von Recklinghausen syndrome. NF1 is usually is a fairly benign condition but occasionally can cause more serious complications most of which can be effectively treated especially if detected promptly. Informing NF families and their doctors about the condition in some depth will lead to the optimum management of the condition. Much research is going on into treatments for NF1 and some of the complications. Although the condition itself is not yet curable much can be done to allow youngsters growing up with NF1 to realise their full potential and lead active and fulfilling lives. NF1 is very variable and for many people who have NF1 the problems are largely cosmetic but in about a third of cases more serious complications can occur. These include diffusely spreading deeper nerve growths (plexiform neurofibromas), curvature of the spine, bowing of the tibia in the lower leg, tumours of the optic nerve (gliomas) which often remain asymptomatic and severe hypertension. The hypertension can have rare causes which can be cured with surgical intervention. There is a small risk of malignant tumours in the central nervous system and the nerve sheath and occasionally elsewhere. About 50% of people with NF1 have some learning difficulties, sometimes in specific areas, but the majority of affected children and adults have normal intelligence. If there are difficulties they may involve concentration, coordination, memory, visuo-motor and visuo-spatial skills, organising and processing and sometimes language. Behavioural problems can occur and children may experience significant self-esteem problems in adolescence which is exacerbated by the appearance of the neurofibromas. Although the condition itself is not yet curable much can be done to allow youngsters growing up with NF1 to realise their full potential and lead active and fulfilling lives.