From fire in the belly to a boiling heart: fuel for participatory research.
It has been said that governmental bureaucracies lack the animating life force that is normally provided by the human conscience. Research efforts that include patients and their representatives in the planning and regulatory process can add back this animating life force, a force Friedrich Wilhelm Nietzsche describes "... that your self be in your deed as the mother is in her child-let that be your word concerning virtue." This paper comprises our invited introductory remarks as patient activists at this symposium, entitled "The Menstrual Cycle and Adolescent Health" and held in Potomac, Maryland in mid October 2007. Attendees included patients, patient advocates, and experts from a variety of fields and disciplines. While our stories have their share of pain, that pain developed into a passion to help others in similar circumstances. A consortium of passionate community activists interested in the menstrual cycle could play the role as a "governmental conscience" around this issue. Developing a community consortium initiated via partnerships between patient advocates and investigators could direct more attention and funding toward menstrual cycle research.
Hijane
Karima
K
Rachel's Well, Inc., 9513 Millgate Pl., Burke, VA 22015, USA. Karima@RachelsWell.org
Heyman
Carly
C
Bell
Maureen
M
Busby
Mary Beth
MB
D000293:Adolescent; D035843:Biomedical Research / Q000331:legislation & jurisprudence*; D005260:Female; D005600:Fragile X Syndrome; D005693:Galactosemias; D006077:Government Agencies; D006801:Humans; D010344:Patient Advocacy; D016649:Primary Ovarian Insufficiency