Are you a: q Patient q Parent q Other Family q Diabetes Insipidus q Panhypopituitary or Total pituitary removed. q Diabetes q Growth Hormone deficiency …
Cushings Support Research Foundation Membership Update Form
Name ________________________________________________________ Date
_________________
Address
____________________________________________________________________________
__
City, State, Zip
________________________________________________________________________
Home Phone___________________________ Work
Phone_________________________
Fax___________________________________ E-
Mail_____________________________
Are you a: Patient Parent Other Family Member
Other______________
Membership Level: Member 30 Friend 50 Sponsor 100
Donor 500
Benefactor 1,000 I cannot afford payment at this time
Date of Birth______________________ Gender circle
one Male Female
Occupation please circle: current of former ____________________
Tumor Location/Source of Cushings __________________________
Age at Diagnosis________________________
Month/Year Diagnosed__________________
How long did you have Cushings before diagnosis?_____________________
How many physicians did you see before diagnosis?______________________
Who
originally suggested Cushings as your diagnosis? physician, friend,
read about_________________
Transphenoidal surgery: yes no When____________
Where__________________________
Adrenalectomy: Unilateral or Bilateral When_____
Where________________ By Laparoscopy______
Radiation: Traditional Gamma knife Lineac
When______________________
Have you had a pituitary tumor recurrence? yes no
2nd Surgeries please give
details__________________________________________________________
Other
____________________________________________________________________________
____
Have you been told that you have any of the following:
Diabetes Insipidus Panhypopituitary or Total
pituitary removed
Diabetes Growth Hormone deficiency
Nelsons Syndrome Thyroid Hormone deficiency due to
Cushings
Osteoporosis Female Hormone deficiency due to
Cushings
Adrenal Hormone deficiency Male Hormone deficiency due to
Cushings
Other - please describe
Have you been tested for Growth Hormone deficiency? yes no
Do you take Growth
Hormone? yes no Do you take DHEA? yes
no
Do you have a computer with Internet access and email? yes no
May the CSRF provide your name and phone number to patients that contact
us? yes no
May the CSRF provide your email to patients that contact us? yes no
Would you recommend your doctor to a patient seeking diagnosis/treatment of
Cushings? yes no
If yes, who is your current endocrinologist or primary doctor if not an
endocrinologist?
Name
____________________________________________________________________________
___
Specialty
____________________________________________________________________________
Address
____________________________________________________________________________
_
City, State, Zip
________________________________________________________________________
Phone ________________________________
Questionnaire - Answers to the following questions will be used only for
statistical purposes
What 5 symptoms of Cushings do you feel were most evident with you? List
most evident to least
1 _________________________________ 2
_________________________________
3 _________________________________ 4
_________________________________
5 _________________________________
How much weight did you gain? ___________ Have you lost most of the
excess weight? yes no
If yes, how long did it take to loose the weight? _____ Did you have to
diet and exercise? yes no
Which best describes your current health situation?
Still under treatment or recovering from Cushings
Recovered from Cushings with no residual symptoms
Recovered form Cushings with residual symptoms
I currently physically function at this level:
1 2 3 4 5 6 7
8 9 10
Worst Possible Best Possible
My current emotional state is:
1 2 3 4 5 6 7
8 9 10
Worst possible Best Possible
My memory and thinking currently function at this level:
1 2 3 4 5 6 7
8 9 10
Worst possible Best Possible
Are you currently on
cortisol replacement medication? yes no
If no, how long after your surgery were you able to discontinue
replacement medication? ___________
If you consider yourself recovered, how long did your recovery
take?__________________________
If you consider yourself recovered, how would you describe the recovery
process?
Extremely difficult Difficult Difficult, but manageable Not
very difficult
What were the 3 most bothersome symptoms during your recovery?
1 _________________________________ 3
_________________________________
2 _________________________________
If you consider yourself to be recovered from Cushings what residual
symptoms do you have?
1 _________________________________ 4
_________________________________
2 _________________________________ 5
_________________________________
3 _________________________________
Volunteer Opportunities
Are you, a family member, or friend willing to volunteer? yes no
maybe later
If yes, please indicate the amount of time you have available ____
hours/week ____ hours/month
Are you, a family member, or friend interested in
playing a leadership role
in the CSRF? yes no
Please contact me about volunteer opportunities in the following areas:
Patient Support - Answering phone calls Answering emails
Contacting new members
Organizing support group meetings
Fundraising - Organizing a fundraising event Personal letter
writing
Public Awareness - letter writing, phone calls to TV stations,
newspapers, clinics, etc in your area
Medical Awareness - Staffing the CSRF booth at exhibits
delivering literature to local doctors
Please contact me about volunteer opportunities that require the following
skills:
Grant Writing Fundraising Public Relations/media connections
Advertising
Legal Services Business/Non-profit Management
Counseling/Psychology
Writing/editing/literature development Education/training
Medical knowledge
Computer Skills - check all that apply
Word processing/typing Mail merges Data Base
Management-Access
Data Entry Excel or Access Management of large email lists
Graphic Design/layout : Programs you use
______________________________________
Web site
design/maintenance PowerPoint Scanning
and editing photos
Attach additional sheets for any other comments, your story, or questions
for our Medical Advisory Board
Please mail to Louise Pace, CSRF, 65 E India Row, 22B, Boston, MA 02110
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PRIVACY - If you do not want to answer any of these questions, leave blank
Please indicate if you wish to keep any of this information private to
this organization
Source:medicine.uiowa.edu
