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Volume 16 February 2020
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February PTF Meeting: Vaginal Health 










On February 12, 2020, our Vaginal Health team presented the information they selected to include in our CF-Sexual and Reproductive Health Resource guide written by patients for providers and patients.

Meeting Highlights:  Your vaginal health is important to your overall well being and can negatively impact intimate relationships and self confidence. First, understanding vaginal health terminology is the key to seeking proper diagnosis and treatment. The guide will have a section of terms and their definitions to help women with CF better understand many facets of vaginal health. It will also have a symptom chart to help  distinguish symptoms between vaginal yeast infections and bacterial vaginosis. Second, it is important to note that women with CF need to talk to their CF provider if they have a yeast infection while on a modulator like Trikafta or Kalydeco. While most women prefer an oral yeast infection treatment to a cream or suppository, antifungal medications must be limited with modulator use. Third, your vagina is self cleaning so be sure to use mild products that to do not contain perfumes and harsh chemicals.
Fourth, as you age, so does your vagina! Be aware that your vagina will change over the years. This is simply part of the aging process! Dr. Susie Baldwin, a women with CF and transplant recipient, joined the discussion to provide more facts on vaginal yeast infections, bacterial vaginosis and sexually transmitted infections. Susie finds that CFRD and some post-transplant medications can increase vaginal yeast infections. It is important to identify your symptoms and seek proper diagnostic testing. While she understands that seeing another provider is not optimal, Susie recommends that women with CF see their gynecologist regularly to ensure optimal vaginal health. Attendees then asked questions and shared their personal stories.

One issue some women with CF face is vaginal dryness. The team suggested vaginal lubricants to help prevent painful intercourse and damage to the vaginal lining. The team offered peer to peer advice, such as finding a lubricant that is paraben free and does not contain glycerin to reduce irritation with friction and yeast infections. 

During the break out sessions, women with CF discussed the questions they want providers to ask them during medical visits and offered suggestions on questions patients can ask their providers regarding vaginal health.


Women with CF: if you have not taken the survey please click HERE to share your expertise!!  
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Women with CF: Join our next meeting
On March 13, 2020 from 2-4 pm EST (1-3 CST, 12-2 MST, 11-1 PST) CFReSHC Governance Board member, Dr. Leigh Ann Bray, (Univ. of Alabama - Birmingham) will discuss the results of her study on "Health-Related Quality of Life and Body Image in Adults with Cystic Fibrosis." Leigh Ann surveyed and interviewed men and women with CF about body image issues. Leigh Ann's presentation will be recorded if you cannot attend. Women with CF who attend the meeting are eligible for an Amazon gift card.
Following her talk, the Body Image writing group will share what they have learned about Body Image relating to women with CF. We will break into groups so attendees can share their experiences and provide input for the sexual and reproductive health resource guide written by patients for providers and patients. RSVP appreciated but not required. Email: info@CFReSHC.org for login details. 
Understanding Body Image in CF
 
The image YOU see in the Mirror by Lisa Stackhouse

Have you looked in the mirror and not recognize the person you see?  Do you see yourself younger, with more weight or less weight? Are you dealing with weight gain while using modulators and/or post double lung transplant?  Are you struggling to maintain or gain weight regardless of all the effort and energy you put into it?  If so, you may be struggling with an unhealthy body image.

Most of my CF life, I did not have weight issues.  I wasn’t super thin, but I was slender.  Yet I felt comfortable at 110 pounds. Then I had my transplant.  Since I had to weigh myself daily, I watched my weight go up 50 pounds and I noticed my clothes were becoming tighter and tighter.  I put so much focus on my weight gain and increased bloating, that I became self-conscious and worried about what others thought of me.  Since a lot of my old clothes did not fit me anymore, I felt like I looked like a completely different person.  It was hard for me to get to know my new body--the curves, the scars.  I had to buy new clothes.  But I was strategic in what I wore to conceal my roll of fat in my mid-section and my bigger rear end.  All of this led me to feeling guilty, depressed, shameful and not worthy of my new lungs.  My vanity got in the way of what really mattered: Jasmine, my selfless donor,  gave me a new opportunity at life.  I was not honoring her by spending so much time fixated on my new weight, bigger clothes and puffy face.  I kept asking myself “what is wrong with me?”  I looked at the negative not the positive—I can breathe so easily now. I can do things I could not do before my transplant. I had to find a way to honor my donor and accept the image of my body in the mirror.  I learned that happiness and self-acceptance go hand in hand—your level of self-acceptance determines your level of happiness. So, my advice: take time to appreciate yourself and to acknowledge your value.  Self-acceptance is something you build over time…baby steps. Realize that body image involves two key elements: a mental picture of one’s physical body (including size, shape, and appearance) and one’s attitude toward the physical self (such as thoughts, feelings and beliefs about one’s body).  As members of the CF community, there are many things that may concern us about our bodies: our hair or lack of hair, our face with/without signs of aging like lines and brown spots, our body shape whether under or overweight, our height, our teeth (if discolored), our lack of muscle tone or physical disability, the size of our breasts, or even the scarring that comes with surviving CF.  A healthy body image does not mean you think your body is perfect. It means you are comfortable with the body you have. 
The Dark Side of Trikafta by Cheriz Kunkel 

I’ve always struggled with weight gain. I had a stomach tube for over 17 years. After three weeks on Trikafta, I have gained 10 pounds and counting. It is nice to be in a healthy weight range for once in my life, however there are consequences I never imagined.

First, I gained weight—fast. Suddenly, my face was fuller, my thighs were thicker, and I jumped 2 bra cup sizes. I can feel a difference walking, jogging, and while playing with my kiddo. My thighs jiggle and my chest bounces. I can no longer just wear tanks with built-in bras. Real bras make me feel like I’m suffocating; I do not know if that’s due to my barreled rib-cage or due to my lack of lung function, or maybe it is just a psychological thing. But I hate that my chest is bigger. I know many people have to deal with weight gain troubles, but going from skinny and flat to shapelier in a matter of days, rocked my world. Finding clothes in my closet to fit is frustrating. It is hard to feel attractive when nothing fits or looks the same on me. My self-image and self-esteem have been impacted.

 Second, I’m hangry all the time. Yes, I’m so hungry I feel angry. While my husband, says I have not quite turned into my prednisone hungry monster, I’m never full or satisfied. We buy a bag of snacks, the next day they are gone. I do have to watch the types of food I eat due to my GI issues like no grease or fried foods, and limit dairy, processed foods, and caffeine. I manage to find things I can eat but, I do not want to be this angry, never-ending eating monster that skulks around the house shoving Twinkies in my mouth.

Third, these changes affect my whole family because of the cost. We live on a budget, a tight budget. I work part-time from home, we are foster parents to a special needs child, and my husband works full-time while doing a master’s degree online. We monitor every dollar we spend. Now, all of the sudden, our grocery bill has doubled, and none of my clothes fit! I need new bras, underwear, pants, even tank tops. I do not have money for a new wardrobe and my new snacking habit is blowing up our grocery budget.
 
Finally, I worry about what this means for the future. Will I keep gaining weight? Will I eventually have to watch my weight, or even diet? As someone who has been able to eat whatever/whenever, I have no idea how to diet. It is not a problem yet, so I try not to worry about the what-ifs. For now, I’m just trying to get used to my new body. I do hope that after a while my hunger will die down. I keep reminding myself to be thankful for the lung function I have gained on the modulator. For now, I try to stay positive. 
Governance Board Updates
CFReSHC Activities 2016-Present

Governance Board
This group makes strategic decisions about the future of the collaboration and project. It is in charge of handling recruitment strategies, communication between groups, delegation of tasks and development of CER questions. At present (January 2020), the board includes 6 people with CF and 5 CF researchers/ clinicians. Each board member serves on at least 1 subcommittee (Communications, Group Norms and Governance, Grant Writing and Meeting Planning). 

Research Advisory Panel 
The RAP is comprised of 9 researchers and 6 patient-partners. The group is responsible for developing Comparative Effectiveness Research (CER) questions that meet the needs and priorities expressed by the CF-PTF and for providing technical expertise and feedback on any future PCORI grants and research protocols that arise from this initiative. The RAP group has met 12 times since 2017 and have developed 7 topic-specific workgroups. These workgroups include: 1) reproductive health decision aid tool, 2) care coordination/ patient-centered medical home, 3) parenting with CF & maintaining health, 4) menopause/peri-menopause, 5) hormones/CF physiology, 6) body image, and 7) urinary incontinence.  Three of these work groups are continuing to meet with the goal of developing grants.


Patient Task Force
The PTF includes 182 women with CF who are interested in getting involved in patient-centered outcomes related discussion on women’s sexual and reproductive health-themed topics that warrant future research. PTF meeting topics include: parenting, SRH priorities, incontinence, body image, hormones, modulators, vaginal health, nutrition, creating relationships with women’s health care providers, pain, genetic testing, menopause and aging, and more. Since 2017, the CFReSHC PTF has had a total of 18 meetings.

Grants
  • Funded Grants (Current)
    • PCORI Eugene Washington Award - PI: Emily Godfrey, MD, MPH
    • CFF Impact Award - PI: Sandy Sufian, PhD
    • Fertility preservation in women with cystic fibrosis pre-lung transplantation - PI: Sigrid, Ladores, PhD, RN, PNP, CNE
  • Submitted Grants (awaiting response)
    • CFF Clinical Pilot Feasibility Hormone Grant
  • Submitted Grants (unfunded)
    • UIC Interdisciplinary Grant
    • Rare as One
    • Portes Foundation
    • FWW
    • Genetech
    • Gilead
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!

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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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