1) If you do not suffer from EB, how is the sufferer related to you (e.g. husband, daughter, nephew, you are their carer)? If you are related to more than one sufferer, please either chose one to fill this out about or fill out a separate questionnaire about each sufferer.

2) How old is the sufferer?

0 - 5 6 - 10 11 - 15 16 - 20 21 - 30 31 +

3) What form of EB does the sufferer have?

Simplex Junctional Recessive Dystrophic Dominant Dystrophic

What is the variant (if any)?

4) At what age was the EB diagnosed?

0 - 1 2 - 10 11 - 20 21 +

Has the sufferer had any form of surgery?

Yes No

6) Is the sufferer currently undergoing therapy?

Yes No

7) Please mark any of the following that the sufferer CURRENTLY wears.

Splint

Brace

Bandage

Glove

Other

8) Please mark any of the following that the sufferer has PREVIOUSLY worn.

Splint

Brace

Bandage

Glove

Other

9) The following is a list of statements. Please place a number, between 0 and 5, beside each one, indicating how you agree with it. Use 5 for strong agreement and 0 for disagreement. The mechanical aid to be developed should:

a) support the hands and fingers while straightening them

b) separate the fingers

c) protect the hands and fingers from damage

d) prevent blisters from growing or forming

e) prevent shear pressure from being applied to the skin

f) not adhere to wounds

g) provide comfort to the wearer

h) provide some degree of movement

i) not limit the use of hands unnecessarily

j) be water-resistant

k) not react with chemicals which would usually come in contact with the skin

l) be durable

m) be lightweight

n) fit securely to hand or arm

o) not cause damage to other parts of the body

p) be of minimum cost

q) be aesthetically pleasing to the wearer

If you have other comments regarding the mechanical aid, please let me know below.

Would you like me to get in touch with you about the development of this project?

Yes No

If yes, please leave your email address below.