Building a Relationship With Your Women’s Health Provider

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) Invitation to Participate

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: cfreprohealth@gmail.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.

Sexual and Reproductive Health Resources

Looking for practical, up to date information about sexual and reproductive health for women and girls with CF?

Guides from puberty to incontinence to urinary tract infections to contraception and pregnancy address in detail many areas of sexual health and CF. To help you start the conversation,  share them with your CF team, pediatrician or gynecologist. Continue reading Sexual and Reproductive Health Resources

CF and Menopause—I have questions…

By Georgia Brown

As a woman with Cystic Fibrosis, at 47, I am considered old—but it is a title I relish.  It means I have weathered the CF storm and I look at each birthday as an accomplishment.  But as I enter the next phase of my life, I find I have more questions than answers.

While I don’t fear menopause necessarily, I do fear embarking on this life changing phase without understanding how CF puts its unique twist on it.  And that is why I am glad that I have found the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC).  Each month the group meets to discuss issues specific to women with CF.  Then CFReSHC uses the feedback from meeting participants to help shape future CF research.  This is one way, we, as patients, pave the way for improved sexual and reproductive healthcare.  

The next virtual meeting “Hormones Across the Lifespan” will be Thursday, February 22, 2018 from 11 am to 1:00 pm EST.  Dr. Raksha Jain of the University of Texas Southwestern will discuss how hormones affect women with CF from puberty to menopause.  Then, the CF women in attendance, will break into smaller groups to discuss personal stories and identify the top three hormone-related topics that need further research.  The meeting is open to all women with CF in the United States.  For more information on CFReSHC and for login information from your laptop, or mobile device, email CFReSHC at cfreprohealth@gmail.com. Women who attend receive a $25 gift card from Amazon.  

Introduction of New Therapies Affects Pregnancy Rates in Women With CF

The overall rate at which women with cystic fibrosis are becoming pregnant dropped slightly in recent years — coinciding with the introduction of CFTR modulators and the clinical trials that led to their approval as CF therapies — but appears to be rising again to pre-trial levels, a study reports.  Continue reading Introduction of New Therapies Affects Pregnancy Rates in Women With CF

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

Women with CF, we need your expertise and opinions!

Become a member of the CF-Patient Task Force to discuss sexual and reproductive health issues that affect women with CF.  As patients with CF live longer, CFReSHC is committed to patient-engaged research through partnerships with people with CF, researchers, and advocates.  Continue reading The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

Women with cystic fibrosis may benefit from specialized sexual and reproductive health care and education, UPMC study shows

http://www.medicalnewstoday.com/releases/309962.php

For female cystic fibrosis (CF) patients and providers, individual CF health care specialists have a significant role in helping patients gain access to educational resources that can help them improve sexual and reproductive Continue reading Women with cystic fibrosis may benefit from specialized sexual and reproductive health care and education, UPMC study shows