By Melissa Shiffman
After I spoke to my CF doctor about my desire to get pregnant, she recommended an ob/gyn who worked with other CF patients. I saw her right before I got pregnant and continued to do so throughout the birth of my daughter, my miscarriage two years later and the birth of my son a year after that. She was kind, caring, thorough and had knowledge of CF that we found comforting. While I was pregnant with my son, we had an issue over insurance that compromised my trust in her. My CF center recommended a new gynecologist who I saw for a number of years. She was smart, straightforward, attentive and always asked about my CF but I felt rushed during my my appointments. Talking about my concerns was like a going through bullet point checklist rather than a partnership so I asked friends for recommendations. One OB/gyn I tried was fantastic the first time I saw her but when I returned this past year, I waited for hours, then only got 2 minutes with her to explain my concerns about a possible hormonal issue, she sent me to another specialist who told me I did not have breast cancer. That’s not why I went to her but she did not even listen to my actual hormonal concerns. The search is on again and I’m feeling so frustrated.
I would love to build a relationship with a women’s health provider now that I’m on the cusp of perimenopause. I feel like I’m embarking on a journey with no direction. I am hoping for some guidance from Drs. Emily Godfrey and Sheila Mody, CFReSHC board members and women’s health care providers, who will discuss how to find a women’s health care provider that meets your needs by reviewing what questions to ask and clarifying your goals for each visit at the CFReSHC Patient Task Force meeting on Thursday April 4, 2019 from 1-3pm EST.
Attendees can share their personal experiences, help develop potential research questions to be addressed by the CFReSHC research advisory panel and receive an Amazon gift card for their time. For more information on CFReSHC and for login information email CFReSHC at info@CFReSHC.org.
The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) is a patient engagement project that provides women with CF the opportunity to be equal partners with healthcare professionals to shape the future of CF research. CFReSHC offers women with CF the opportunity to participate on the Governance Board, Research Advisory Panel and Patient Task Force as Patient Partners to develop research projects that directly respond to the questions faced by women with CF. CFReSHC holds monthly virtual meetings on topics that impact the lives of women with CF like contraception, family building, hormone influences on CF, incontinence and menopause. As we enter our third year, CFReSHC is looking for women with CF who are passionate about sexual and reproductive health research to join our collaborative who can commit 4-6 hours a month and we provide a small honorarium for your time commitment.
CFReSCH is looking for a:
Social Media Strategist who has connections in the CF community or who is willing to engage with the CF community on our behalf. CFReSHC currently has a social media presence on Facebook, Twitter and Instagram and the applicant would need to be able to post 2-3 times per week as well as check the platforms regularly and make responses as needed. The applicant would need to attend 3 paid monthly meetings often held during work hours.
Grant writer and Coordinator who has connections in the CF community or is willing to connect with the CF community and engage it to seek out funding opportunities for potential grants. The applicant would need to maintain a database of potential grant opportunities. An applicant who has experience writing applications is preferred. The applicant would need to attend 3 paid monthly meetings often held during work hours.
Women with CF are welcome to send a letter of interest to: email@example.com. Together, we will respond to the health needs of the CF community by providing data for healthcare professionals to pave the way for improved sexual and reproductive health resources, healthcare, and knowledge.
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 Continue reading Partnering with researchers to discuss women’s health as it relates to having CF