1. Endometriosis Association
Mary Lou Ballweg President/Executive Director International Headquarters Milwaukee, Wisconsin U.S.A. Founded 1980
Copyright 2005 Endometriosis Association 1

2. Patients and Science: Essential Partners in Breakthrough Research How the Endometriosis Association and its Groups Worldwide Partnered with Science for 25 years of Research Success 2

3. Data Demolishes Myths 3

4. Background • Data based on Endometriosis Registry I and data
collected as part of the 1998 North American
Member Survey
• Mailed out 10,000 questionnaires to North
American Members
• Registry II data based on first 4,000 returned
questionnaires
• Registry I – 3,020 cases ( )
• Registry II – 4,000 cases (1998) 4

5. Symptomatology Percent (%) 5 Pain at time of menstruation
(dysmenorrhea)
Fatigue, exhaustion
Diarrhea, painful bm or other intestinal upset at time of period
Abdominal bloating
Heavy or irregular bleeding
Pain with or after sex (dyspareunia)
Nausea, stomach upset at time of period
Dizziness, headaches at time of period
Percent (%) 5

6. Symptomatology Percent (%) 7 6 Irregular bleeding
Low resistance to infection
Infertility
Premenstrual spotting 7
Low-grade fever
Pain related to urination
Candidiasis (allergy to &
infection of C.albicans)
Mid cycle bleeding
Mitral valve prolapse
Percent (%) 6

7. Long Delays in Diagnosis are a Problem Worldwide
Age of First Pelvic Symptoms vs. Age of Diagnosis
Endometriosis Association Research Registry
U.S./Canada (1998)
Average Delay to Diagnosis = 9 to 10 years
References:
Sinaii, Cleary, Ballweg, et al. “High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis,” Human Reproduction Vol. 17 No. 10 pp , (2002); 1998 data from U.S. and Canada Endometriosis Association Data Registry; Ballweg, Laufer, et al. “Adolescent Endometriosis: State of the Art Forum,” special supplement of Journal of Pediatric & Adolescent Gynecology Vol. 16 No. 3, pp. S21-S26 (2003); Ballweg, ML Endometriosis: The Complete Reference for Taking Charge of Your Health (New York: McGraw-Hill), 2004.
Sinaii, Cleary, Ballweg, et al. “High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis,” Human Reproduction Vol. 17 No. 10, pp , (2002); Ballweg, ML VI World Congress on Endometriosis, 1998; Ballweg, ML “New EA Research Shows Disease is Starting Younger, is More Severe,” Endometriosis Association International Newsletter, Vol. 19 No. 1-2, 1998; Ballweg ML, Laufer M, et al. “Adolescent Endometriosis: State of the Art Forum,” special supplement of Journal of Pediatric & Adolescent Gynecology Vol. 16 No. 3, pp. S21-S26 (2003); Ballweg, ML, Endometriosis: The Complete Reference for Taking Charge of Your Health (New York: McGraw-Hill), 2004. 7

8. Consequences of Delayed Diagnosis*
Long Delay is Costly to the Woman and her Family
U.S./Canada
Unable to Carry on Normal Work
Percent %
Ballweg ML, VI World Congress on Endometriosis, 1998; Ballweg, ML “New EA Research Shows Disease is Starting Younger, is More Severe,” Endometriosis Association International Newsletter, Vol. 19 No. 1-2, 1998; Ballweg ML, Laufer M, et al. “Adolescent Endometriosis: State of the Art Forum,” special supplement of Journal of Pediatric & Adolescent Gynecology Vol. 16 No. 3, pp. S21-S26 (2003); Ballweg, ML Endometriosis: The Complete Reference for Taking Charge of Your Health (New York: McGraw-Hill), 2004. 8

9. Age of First Pelvic Symptoms
Percent (%) 9

10. Allergic Diseases
Percent (%) 10

11. Autoimmune Diseases in Women with Endo
* = Chronic Fatigue Immune Dysfunction Syndrome
Sinaii, Cleary, Ballweg, et al. “High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis,” Human Reproduction Vol. 17 No. 10, pp , (2002) 11

12. Cancer in Women with Endo and Their Families12

13. Funding – It’s All About Partnership and Synergy13

14. Support Research Education
Synergy: operative action in which the total effect is greater than the sum of the parts 14

15. 15

16. Clinical Research Program Attributes
A large metropolitan area with a large and diverse patient base
A country with a strong Association group to provide the ongoing patient involvement and insights essential to breakthroughs
Association Advisors or clinicians of high caliber
A visionary clinical/scientific leader
Multidisciplinary practitioners
Strong institutional support 16

17. Open Research Fund Open to researchers from anywhere in the world
Currents funds 20 projects in six countries (U.S., Canada, England, Scotland, Sweden, and Belgium)
Purpose:
promote new ideas
attract new investigators to endo research
supply start-up funds for pilot projects leading
to major funding from government and other
sources 17

18. Partnership and Synergy = Results18

19. Severity of Endometriosis**  *   19

20. Together We Make a Difference!20