Announcing a Patient-Engagement Study for Women with CF about Their Experiences throughout the Reproductive Life-course

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 reproductive lives and make decisions both similarly and differently, and how hormones affect CF. I have always noted, for instance, how the contours of my dating life, married life, adoption decision, and now peri-menopausal experiences have been shaped by the fact that I have CF. Similarly, for at least two decades, I have been arguing that estrogen (in particular) and progesterone make me more congested during my cycle, as well as cause GI issues, sinus migraines, and extreme fatigue. Only now are researchers looking into this issue and are trying to understand how female hormones affect our life spans.

In addition to speaking to my CF friends, sister and one of my doctors, I have also spoken to my friend and colleague, Emily Godfrey, for over a decade about these issues. Emily is a family physician doctor who specializes in family planning so she always lent a sympathetic and interested ear to my complaints and observations.

Now Emily and a group of researchers– with me as the CF representative on the team — have been awarded a patient-engagement 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) and will elicit CF women’s voices to learn about a host of topics that affect us in unique ways, including: sex and sexuality, decisions not to pursue motherhood, pregnancy and pregnancy prevention, infertility treatment, adoption, breastfeeding and child care, periods and menstrual cycle symptoms, peri-menopause and menopause, and sexually transmitted infections. Through a series of 4-5 discussions, women with CF will finally have an opportunity to talk about what matters to them as women with CF living through the various stages of our reproductive lives.

We are hoping to find 15 women with CF who would be willing to volunteer their time for monthly discussions over a period of 4-5 months. Each discussion will last about 1.5 hours to talk about important reproductive health issues and develop research questions for further study. It will be led by one member of the core team on the grant. The meeting sessions will be implemented by using online chat rooms through a portal called World-Café (www.theworldcafe.com).

If you have always had thoughts about what issues you are facing as a woman with CF who is of early, late or post reproductive age and want to participate in our discussions, we would love to hear from you. We are looking for reproductive-aged women of all ages, from teenagers to those already in menopause. We are hoping that by sharing our experiences we will be able to find out what issues need to be further addressed and studied while at the same time support one another.

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

kellyg18@uw.edu. We have scheduled our first participant session on August 31 so contacting Kelly by August 26 would be ideal. Participants will receive a small stipend of $25 per discussion session.

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