Table 5 participants’ Burden of neurofibromatosis 1 by factors (N = 356)

concentration and life with the disease

Do you think that your concentration problems have had a negative impact on your work?

11

23

40.2

3.9

14.9

7

Do you think that your concentration problems have restricted your daily activities?

20.2

27.5

24.4

12.1

9.8

5.9

During your education, do you think that you had learning difficulties because of your NF1?

24.2

20.5

19.1

9.3

16.6

10.4

Do you think that your concentration problems have hindered your inclusion in society?

43.8

20.5

20.2

3.4

7.3

4.8

Have you had any difficulties in asking for help?

32.6

23

23.6

6.2

8.4

6.2

Has the paperwork in connection with your NF1 been difficult?

32

24.2

20.2

7.3

5.1

11.2

social burden of illness and future worries

Because of your NF1, has the way other people look at you caused you to suffer?

8.1

14.6

27.5

5.6

17.1

27

Has your NF1 affected which clothes you choose to wear?

10.7

9.8

10.4

3.9

20.5

44.7

Have you felt that you have no control over what is happening to you?

17.7

22.2

30.6

5.3

10.7

13.5

Are you sometimes afraid of the future because of your NF1?

6.7

6.7

18

7

18.5

43

Do you think your NF1 has made you shyer?

9.8

14

18

7.9

17.1

33.1

Has your NF1 hindered your sexuality?

31.7

13.8

16.6

3.7

13.8

20.5

Perspectives

Have you felt that your socio-economic status may be directly linked to your NF1?

37.4

15.4

18.5

7.3

8.7

12.6

Have you felt the need to justify yourself?

25.6

18

16.9

5.1

16.3

18.3

Have you perceived your NF1 as a physical disability?

31.7

23.9

19.4

11.5

8.1

5.3