Table 1 Demographic and disease information of postal survey sample (n = 40)

Sex (male)

15

38

Age (years)

 Mean (SD)

39.7 (14.8)

 Range

19–67

Marital status

 Married / Living as married

21

53

 Single

19

48

Employment status (n = 39)

 Employed (full-time and part-time)

27

69

 Retired

2

5

 Long term sick leave

4

10

 Student

3

8

 Unemployed

3

8

Disease information

Self-reported general health

 Poor

1

3

 Fair

12

30

 Good

25

63

 Very good

2

5

Self-reported severity of PN

 Mild

6

15

 Moderate

26

65

 Severe

7

18

 Very severe

1

3

Treatment for PN

13

33

Other health problems present (self-reported)

15

38

Other clinical characteristics

De novo NF1 mutation

30

77

Generalised NF1 presentation

35

88

PN location

 Spinal

7

18

 Head/neck

10

25

 Thorax

1

3

 Abdomen/pelvis

6

15

 Limb

16

40

PN-related symptoms

 Pain

13

33

 Neurological deficits

6

15

 Disfigurement

5

13

 No symptoms

16

40