CFReSHC meeting on Aging, Menopause and CF

What is menopause? I’m 30 years old and have heard it groused about for years, but I really don’t know what it is. I have heard from older women with CF that maybe it starts earlier in CF women and that the experience could be different from the non-CF population. I know it has something to do with hormonal changes, more estrogen, maybe? But I have no idea how it will impact my health in the future or what signs and symptoms I should be on the lookout for. On this one, I will follow the girl scouts’ mantra “always be prepared.”

Luckily, CFReSHC is hosting their next Patient Task Force meeting about the menopause experience. It is a great opportunity for any adult woman with CF to learn about what to expect in a few years’ time or to share your wisdom and questions if you’re experiencing or have experienced it.

The meeting will be December 10th from 2-4pm EST.  Laura Mentch, Health Educator, will be sharing her knowledge on the subject.

Please email info@CFReSHC.org, or follow us on facebook for more information.

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

Behaviors, experience and health care utilization in young women with CF

In this issue of the journal, Kazmerski et al. describe the sexual and reproductive health concerns and related healthcare utilization of young women with CF ages 15–24 years at five CF centers compared to that of the general population [[1][2]]. They found that the sexual activity of young women with CF mimics the behaviors of non-CF counterparts; however women with CF have less access to sexual and reproductive health information and services. Continue reading Behaviors, experience and health care utilization in young women with CF

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)

We want to hear from you! CF Roundtable article submission deadline soon

CF Roundtable Article submissions are due December 15th.

The Focus Topic for the Winter 2018 issue is “Becoming A Parent With CF”.  If you – our adult readers with CF – have thought about becoming a parent, what decisions and considerations did you make? Are you a parent or do you help raise a nephew, niece or another child relative? Whether you already have children or want to start a family, tell us about your journey to parenthood.

Continue reading We want to hear from you! CF Roundtable article submission deadline soon

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) Patient Task Force Meeting is on September 18th!

By Kelly Gilmore

On Monday September 18th from 12:30pm PST- 2:30pm PST we are having a virtual discussion with CF women, and you’re invited! We need your help in understanding what aspects related sexual and Continue reading The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) Patient Task Force Meeting is on September 18th!

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

New research sheds light ‘gender gap’ in cystic fibrosis

http://www.medicalnewstoday.com/releases/312852.php

A minor hiccup in the sequence of a human gene can have devastating impacts on health. Such flaws cause cystic fibrosis (CF), a disease affecting the lungs and other vital organs, often leading to death by the age of 30. Continue reading New research sheds light ‘gender gap’ in cystic fibrosis