CED Questionnaire...
Christina
Below are a list questions that have been devised by members of this
group in order to find out as much as possible about the different
ways that each of us are affected by CED.
I would be very grateful if you could take a few minutes to read and
answer the questions. :o)
**Please note - This groups content is private, so only members of
this group will be able to see your answers!!**
We hope that we will each learn something from each others experiences
and that maybe we could use the information to show to our own doctors
and specialists.
Maybe we can even use it to convince someone, somewhere, to carry out
some research onto CED! :o)
So here goes...
Name:
Current Age:
Approx Height:
Approx Weight:
1) How old were you when your symptoms began and what were they?
2) At what age were you diagnosed with CED?
3) i) Are any other members of your family affected by CED?
If yes, what relationship are they to you and how does their CED
affect them?
ii) For those of you who have children: Have your children been
affected by CED and are thier symptoms better, worse, or the same as
yours?
iii) For CED women: Did Pregnancy, Nursing, or any other hormonal
changes have any effect on your CED? If yes, what were they?
4) What part(s) of your body are affected and how are they affected?
5) What pain medications have you taken during the course of your life
and were the effects good or bad?
6) Have you tried any other medications or treatments e.g.
Corticosteriods, Bisphosphonates, etc. and did they help?
7) Do you experience fluctuating pain levels, or is it more or less
the same at all times?
8) Are there certain things that make your pains worse? e.g. changes
in the weather, physical exertion, hormonal changes (women).
9) Are there certain things that help to ease your pains (apart from
medication)?
10) Have you noticed changes in your condition as you have got older?
e.g. has your pain worsened or improved?
11) Have you developed any other problems as a result of bone
thickening? (e.g. Mobility problems, Movement of limbs is restricted,
Eyesight or Hearing problems?)
12) Have you noticed any problems with your teeth or jaw that could be
related to CED?
13) Were you born with more or less teeth than normal?
14) Do you experience pain/infection/congestion in your sinuses? Has
it been long-term?
15) Are you prone to bone fractures and have difficulties with the
bone healing afterward? If so, Where did the fracture occur?
16) Have you have your DNA tested to determine which gene causes your
CED? If yes, what were the results?
17) Please add any additional information that you feel may be related
to how CED affects you.
18) What type of Doctor or Specialist do you go to for help with your
CED? (e.g. Rheumatologist, Endocrinologist, etc)
THANK YOU ALL FOR YOUR TIME!! :o)