I Inhaled Viruses As A Last-Ditch Effort To Fight A Drug-Resistant Bacterial Infection

By Ella Balasa

A few months ago I tried an experimental treatment called phage therapy to treat the relentless Pseudomonas in my lungs. This treatment was documented by the Associated Press and since then I have received many questions from individuals asking how I feel now. Well, I wrote a piece to tell the story from my perspective and hopefully provide some information that you can’t gather from just a news blurb.

I also discuss the importance of understanding scientific knowledge about treatments and disease prognosis. Without this, I would have shied away from trying this treatment that significantly helped me. It’s a vital aspect of being a receiver of health care ― asking questions, probing for answers, and gaining the knowledge to feel empowered to take an active role in shaping your health journey.

If anyone is interested in learning more about this experience, take a read at HuffPost here.

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.   

Nutrition – Patient Task Force Meeting

By: Melissa Shiffman

Growing up, I had an unhealthy relationship with food. My brother and I both were diagnosed with Cystic Fibrosis as children. He was pancreatic insufficient, painfully thin and took handfuls of enzymes. Meal times were filled with constant fighting as my parents tried to force him to eat. Meanwhile, I was pancreatic sufficient with a very healthy appetite. Our body shapes could not be more different! He was skin and bones and I was chubby. As I got older, “chubby” was socially unacceptable. I was twelve the first time I went on the “hotdog diet!”

I have no real memory of fresh fruit and vegetables being readily available. Instead, our refrigerator was filled with high calorie, high fat foods to encourage my brother to eat: Kit Kats, Nestle Crunch, ice cream, Sustacal puddings. I was told not to eat his food, so I snuck it and ate in my room. I gained more weight. My brother made fat faces to get under my skin as I sucked in my cheeks back to him.

Like a normal pre-teen, I became self conscious about my appearance.Everyone talked about fad diets and losing weight. I absorbed that being thin was ideal. By the end of 8th grade, I convinced myself that, if I read the ingredients in things like Oreos, I would find a way to be disgusted. Eventually, I talked myself out of eating most foods except for grapefruit and canned tuna without mayo. I ate minimally and cut out sweets. I lost a lot of weight, started to look more like my brother (but less sickly) and revelled in the compliments on my weight loss.  

I know this is not the normal CF story. However, it is so important to recognize our relationship with food and to rectify our lack of education on eating well when you are underweight or gaining weight on modulators. Therefore, I am looking forward to Dr.Tonja Gonska (gastroenterologist at Sick Kids Hospital in Toronto) discussing healthy eating vs. high fat/high caloric intake, body composition vs. BMI and how nutrition plays a role in healthy weight gain for women with CF at the CFReSHC Patient Task Force meeting on Thursday March 21, 2019 from 3-5 pm 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.  

Be Involved in a Meeting with FDA on CF!

On October 29th, individuals with cystic fibrosis and their families will have a unique and pivotal opportunity to share their experiences with representatives of the FDA during a live-streamed interactive meeting.

CFRI is very honored to host an Externally-Led Patient-Focused Drug Development Meeting on Cystic Fibrosis with the FDA on Monday, October 29th. This is an amazing and singular opportunity to share the patient experience with FDA representatives. They want and need to know the impacts and burden of the disease, your hopes for new therapies, and what you are willing to go through to find these new drugs.

PLEASE register to participate in this free live-streamed meeting! We need your input and participation You will have the opportunity to participate in live polling, and to email and call in to share your experiences. Those who do not have CF/a family member with CF should also feel free to join us.

You can register and log in for any or all of the day’s presentations and discussions. The day begins at 9:45 am. Please note: all times listed are East Coast time, as the meeting will be held at the College Park Marriott Hotel and Conference Center in Hyattsville, Maryland.

Here is the link:  http://cfri.org/advocacy/advocacy-events/

Speakers/Panelists
Jen Caruso
Lise-Courtney D’Amico
Boomer Esiason
Gunnar Esiason
Joseph Klausing, JD
Emily Kramer-Golinkoff
Robert Lim, MD
Jane Mitchell
Anna Payne
Kat Quinn Porco, MS
Tejashri Purohit-Sheth, MD
Arek Puzia, CPA, MBA
Emily Schaller
Isa Stenzel Byrnes, LCSW, MPH
Ahmet Uluer, DO, MPH
James Valentine, JD, MHS

Thank you for having an impact upon those who are assessing the safety and efficacy of new CF therapies, and making recommendations for their movement to market. 

Your voices matter!