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Volume 17 March 2020
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March PTF Meeting: Body Image

The Body Image PTF was held on March 13th. Leigh Ann Bray, Assistant Professor of Nursing at the University of Alabama and current PhD candidate, presented her work on a pilot study researching body image in people with CF. Her past study “Coping and Health in Adult CF Patients” showed that weight and body image were indeed prominent concerns among CF adults. She shared that body image experiences differ by gender. For instance, she found that females tend to report more positive HRQoL in terms of body image and weight despite having low BMI and low weight. She built upon that study to research “Weight, Body Image and Health-Related Quality of Life (HRQoL) in CF.” 

CFReSHC was the first group to hear the results of this pilot. She interviewed 10 women and 10 men. This study  explored the impact of clinical variables such as modulators, lung function, body image and weight on quality of life. Leigh Ann re-examined gender specific attitudes towards body image improvement like dieting (females) and weight lifting (males).
In addition, she wanted to see if patients wanted BMI or another measurement like muscle mass used at their clinic. She found a striking difference between men and women’s responses concerning weight and body image. Women viewed their images much more positively. Through interviews, she found that women had many more factors attributing to weight concerns and were either happy with their weight or wanted to lose weight. Women focused on bloating and looking pregnant, the emotional impact of short stature, the anxiety surrounding looking different (sickly) from their healthy peers and the staining of their teeth from medications. However, men wanted to gain weight to keep up with their peers in stature and size. Interestingly, participants said they do not speak to their providers about body image. Most suggested the best time to have this discussion is during puberty. Both groups stressed the importance of providers looking beyond the numbers of weight, BMI and lung function and speak about patient emotionality and quality of life. 

After a robust round of questions and answers with Leigh Ann, the Body Image writing team presented their work for their chapter written by patients for providers and patients. The team discussed the numerous body image issues faced by women with CF. The most prevalent issues included: belly bloating, clubbed fingers and weight gain after modulators/transplant. Women with CF have self-reported body dysmorphia leading to eating disorders, low self esteem and low body satisfaction. Sadly, this can lead to non-compliance and intimacy issues. There are vast knowledge gaps on body image and CF despite patients’ desire and willingness to share their stories. 
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
CFReSHC had to reschedule the (In)Fertility in CF Patient Task Force meeting. We apologize to those who did not get an advanced announcement. We hope you can attend the rescheduled meeting.
Women with CF: Join our next meeting
We have rescheduled the meeting (In)Fertility PTF for April 14, 2020.
Join us 5-7p E, 4-6p C, 3-5p M, 2-4p P

OB/Gyn Dr. Andrea Roe plans to discuss her study on cervical mucus. Her presentation will not be recorded but she plans to share her presentation slides so please do attend! Attendees will have the opportunity to ask her questions. Please note: Physicians' schedules have been unpredictable due to COVID-19. This meeting will occur even if Dr. Roe cannot join us. The (In)Fertility Team will present their work for the Sexual and Reproductive Health Resource Guide written by patients for providers and patients. Send an email to: info@CFReSHC.org for login details.
Fertile or Infertile:
That is the question for women with CF
One Day at a Time
By: Jordan Robison

I still have vivid memories of playing “house” with my sister when we were little girls. When I was asked what I wanted to be when I grew up, I replied, “I want to be a mom!” It was my dream; it still is. Three years into our marriage, my husband and I decided to start trying to have children. After about two weeks, I noticed that I was spotting for a few days outside of my (very) regular period, so I called my doctor. 

I went in for a checkup and my doctor ordered a transvaginal ultrasound and blood work. The results showed an ovarian cyst on my left ovary, which turned out to not be a big deal. But they also found out that my progesterone levels were very low, which indicated that I was not ovulating. I was heartbroken. 

A couple of weeks later, we saw a fertility doctor who started me on Clomid to increase my progesterone levels. But each month, my progesterone levels continued to decline, and they could not explain why. Three months later, I was done. I could not take the heartbreak any longer. The doctor recommended I see a fertility specialist and get a few other tests done, including a laparoscopic procedure to check for endometriosis or if my fallopian tubes are blocked.

I told them I needed a break for right now but would call if or when I decided to move further. It’s difficult to know when to stop treatments. Is the emotional pain of not getting positive pregnancy tests worth the small glimpse of hope I have each month? I haven’t decided. But what I have decided is that not being able to get pregnant does not mean I cannot be a mom. 

Amid the disappointments, my husband and I decided to pursue fostering and adoption. We found an agency that we liked and started the paperwork and training. Currently, we are about half-way done with the process. We do hope this is the way we become a family—or at least one way we become parents. My dream is to be a mom, not to be pregnant, and we know that any children we welcome into our home will be ours-whether I birthed them or not. We have not decided yet if we are completely done with fertility treatments, but we are taking it one day at a time.
Governance Board Updates
If have you participated in cystic fibrosis research such as being a subject in a clinical study, answering a survey, participating in a focus group or helping with a Quality Improvement project at your clinic, then you have participated in a PART of the research process. However, by the time you are poked, questioned and taking pills, a team of researchers has undergone numerous steps to plan and conduct the study. The goal of CFReSHC (C-Fresh) is to change this process by having patients participate as equal partners with clinicians and researchers in the COMPLETE research process. 

CFReSHC came together to respond to unmet sexual and reproductive needs needs of women with CF. The goal of CFReSHC is to bring Patient Centered Outcomes Research to the CF community. That is why the Governance Board, Research Advisory Panel and Patient Task Force are comprised of patients, clinicians, nurses, and researchers passionate about improving the sexual and reproductive health (SRH) resources, healthcare and knowledge for women with CF.


Currently, CFReSHC is operating with two grants.
 
Our goal is to apply for funding to keep CFReSHC going so that we can continue to hold Patient Task Force Meetings,add chapters to our Sexual and Reproductive Health Guide written by patients for providers and patients and to shape the future of SRH for women with CF. 

Therefore our Governance Board established a "Grants Committee" who meets regularly to discuss potential grants. It will help match researchers with grant opportunities and help patient partners participate in the research process from start (grant writing) to finish (dissemination of results). In addition, our Governance Board continues to discuss grant options as a way of funding the future of CFReSHC. 

If you are a patient partner who has experience with the grant process, and would like to be more actively involved in CFReSHC, please let us know. Also, if you are a researcher interested in conducting CF-SRH research, we have a cache of over 60 priority questions identified and prioritized by women with CF. Please contact us, as we would be happy to help you find grant opportunities and to partner you with patients interested in patient-engaged research.
Upcoming CFReSHC PTF Meetings
We are looking for women with CF to write blogs on their CF Sexual and Reproductive Health. Topics include: pregnancy, hormones and CF symptoms, menopause, vaginal health, sexual function, body image and more. If you are interested, please send an email to: info@CFReSHC.org. We will publish blogs with your name or as "Anonymous with CF." Blog should focus on issues women with CF experience and should be 300-500 words.

CFReSHC Newsletter!

Thank you for taking a few minutes to keep up to date on our activities.
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Cystic Fibrosis Reproductive and Sexual Health Collaborative · 1959 NE Pacific St · Box 356460 · Seattle, Washington 98195 · USA

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