Partnering with researchers to discuss women’s health as it relates to having CF

Written by Sandy Sufian, 48 year old woman with CF

I have recently had the great pleasure to join a diverse team of esteemed colleagues and researchers to finally explore a topic I have been passionate about for many years: how women with CF experience our sexual and reproductive lives and make decisions both similarly and differently, and how hormones affect CF.

My friend, Emily Godfrey, who is a family physician doctor who specializes in family planning and a group of researchers– with me as the CF representative on the team — have been awarded a grant to explore reproductive health issues and life course experiences facing women with CF. The grant is through the Patient-Centered Outcomes Research Institute (PCORI). The goal is to allow women with CF to finally have an opportunity to talk about what matters to them as women with CF living through the various stages of our sexual and reproductive lives: menstruation, perimenopause, menopause, birth control, urinary incontinence, sexuality, GYN issues, pregnancy, reactions to hormones at different stages of one’s life, vaginal infections, endometriosis, body issues, etc. We welcome your input to express what concerns you in regards to this topic.

We invite you to join this very unique partnership with fellow women with CF. This partnership is considered long-term. We are hoping to find women with CF who would be willing to volunteer their time for 2-hour monthly discussions over a period of months (and possibly years) to talk about important sexual and reproductive health issues and develop research questions for further study. Please note, this is not a research study, but a precursor to research in the field on women’s sexual health as it relates to their CF. In addition, those who choose to be part of this group will define the group’s membership and participation norms, help formulate discussion questions, and be a voice to the larger CF community. The monthly meeting sessions will use online video through discussions called World-Café (www.theworldcafe.com). Other discussions will take place within a secret Facebook group.

 

If you have always had thoughts about what issues you are facing as a woman with CF, we would love to hear from you. We are looking for reproductive-aged women of all ages, from teenagers to those already in menopause.

If you are interested, please email Kelly Gilmore, Research Coordinator at: 206-685-1855;

kellyg18@uw.edu. Participants will receive a small stipend of $25 per discussion session.

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