Neurofibromatosis type 1 - Complications of neurofibromatosis type 1

Living with any long-term condition can be stressful and upsetting, especially conditions such as neurofibromatosis type 1 (NF1) that affect physical appearance.

Even people with mild cases of NF1, where the appearance of the skin is relatively unchanged, can feel self-conscious about their appearance.

Feelings of stress and self-consciousness can trigger episodes of depression and anxiety, particularly as a child with NF1 gets older and becomes more aware of their appearance.

Signs that your child may be depressed or anxious include:

performing poorly at school
a loss of interest in activities they used to enjoy
no longer socialising with friends

If you are concerned about your child, encourage them to talk about their feelings to determine whether they need additional support and treatment.

It is recommended that adults with NF1 who have feelings of depression and anxiety should contact their GP for advice.

For more information, see is your child depressed? and tips for coping with depression.

Support groups

There are several organisations and support groups for both children and adults with NF1. They offer services such as helplines and online forums and blogs written by people with the condition.

These organisations include: