Portland Books Editor-in-Chief Whitney Smyth calls the remarkable story of a family wrestling with cystic fibrosis, “a book that manages to be many things: a heartfelt biography … a Continue reading “There Are No Alligators in Heaven!” Scores 4-star Review from Portland Books
By Ella Balasa
I’ve created a list of young woman and men who make the most of life despite battling Cystic Fibrosis. They share their experiences, the good and the bad, on social media. They inspire, educate, and spread awareness about CF. As a person with CF myself, though I live a full life and experience similar obstacles and triumphs, I haven’t gotten the courage to show this kind of vulnerability. I hope they show both CF and non-CF people alike that we all can do many things we set our minds to despite having seemingly insurmountable obstacles in our way.
- Instagram: Fight2breathe
Caleigh is a 27-year-old woman who received a double lung transplant October 20, 2015. She shares posts about her daily struggles and triumphs in dealing with CF and transplant and now more recently dealing with the rejection of her lung transplant and her rapid health decline. She is incredibly knowledgeable about many procedures and tests her and her doctors discuss and she shares them with her followers in a way everyone can understand. Her genuine personality, charisma, and strength are all palpable through her words through which she relates her true fears, hopes, insecurities, and raw emotions about an unknown future. She finds something beautiful in every hard day, whether that be being able to see her pets, spending time with her loved ones, or just reading the uplifting comments on her posts.
- Instagram: lung_story_short
Rima shares her experience of fighting CF through humor and keeping lighthearted. Her sister shares her journey as being her caretaker while she waited for a transplant. She spent many days in the hospital exploring the hallways, playing games, crafting, and making friends with nurses. She has recently received a double lung transplant (5.14.17) and is now sharing her amazing recovery process day by day! Her lung function is increasing quickly and is gaining so much endurance and strength since being transplanted. She shares a lot about CF awareness and is becoming more known through the CF community.
“Hi my name is Rima and I have Cystic Fibrosis. I had come to the point in my health where my old lungs could no longer serve me and I was in need of a double lung transplant. Here I am now at 27 years old with brand new air baggies! It was a long journey but I am made it with the help of my trusty sidekick Laima, my sister. She joined me on my quest for new lungs when I decided to move to Colorado. The transplant center there decided that they didn’t want to do my transplant because they said that my post-transplant care would be tricky and risky due to how resistant the “bugs” in my lungs were to all antibiotics. So then the search for another center began. Thanks to my sister she discovered the U of M in Minneapolis MN with the help of a friend. Since that discovery, we are now part of the U of M family indefinitely. Throughout this whole thing, we decided we wanted to document and share everything Cystic Fibrosis related as well as transplant and organ donation. We started a blog last spring as well as started sharing on social media via Instagram, Facebook, and Twitter. We want to help spread awareness because there are so many people out there that are unaware of Cystic Fibrosis. There are also a huge amount of people that aren’t organ donors, many of them just don’t know how to become one but many just avoid the subject due to either personal or religious reasons. Another thing we want to show people with CF is that you can still have a fun-filled adventurous life, you don’t have to live your life cooped up in your house to keep good health. Laughter, sunshine and the outdoors soothes the body and soul! The Cystic Fibrosis community needs a cure, and with the help of spreading awareness, we can help raise funding for research! If you would like to keep up with our story you can follow us on Instagram: @lung_story_stort, Facebook: lung story short and for the blog atwww.lungstoryshort.com” -Rima
- Instagram: Tiffrich22
Tiff is a 28-year-old woman who was diagnosed at birth with cystic fibrosis. She resides in sunny California where she got a transplant November 30th, 2016 at Stanford University. A few years ago she started a campaign to meet her idol Taylor Swift at a concert. With the help of family, friends, and strangers, she got her wish. Her campaign led her to start her very own YouTube channel, LUNGS4TIFF, where she helps educate people and raise awareness about CF and the hardships while telling her story through videos. She intends to show others through social Media that having a positive spirit and desire for fun in life helps anyone get through the toughest times. She is thriving and planning for adventures to come.
“Through my Instagram, I have been able to show all of the sides of CF and transplant. I knew I wanted to be real and show the not so “glamorous” side of this disease, as well as the happy go lucky side. I feel by showing the hardships that I have faced, it has helped others know that it’s okay to struggle. I always say that there’s always someone going through much worse and that I’m lucky. Now with new Lungs, I am able to start my second chance at life and go check off my bucket list items. I have been able to check off my first NBA game (Go Warriors) and ride in a hot air balloon! I am blessed and can’t wait to post more about my adventures and my journey with new Lungs.
Another way I use Instagram to help the CF community and foundation is through mine and my best friend, Lea, @SaltyCysters page. We have joined forces to provide awareness and started making workout clothes to motivate the CF community to get their lungs moving and profits go to the CF Foundation to use for research and development towards a cure.
CF Awareness is very important to me. My passion is to help others and I think that by sharing my story via Instagram and all forms of social media, I am able to show that being positive is key to conquering this horrific disease. I will continue to raise awareness and share my story, hoping that CF will soon stand for Cure Found.” – Tiff
- Youtube: Staying Salty Youtube Channel
A group of 6 individuals talk, inform, help, and educate about their lives and experiences with CF. They come from all different backgrounds and live all over the country. They each post a video a different day of the week. They make videos on various topics related to living life with CF, including a day in the life, how they tell others about CF, surgeries they’ve had, medication organization, CF clinics and much more. Many videos are informative and interesting to view how others with CF are managing and succeeding in life! They have full-time jobs, they travel, they raise families, and importantly, they raise awareness for the CF community.
- Youtube: The Frey Life
A young couple, Mary and Peter, along with their pooch Oliver, share their day to day lives in daily vlogs on their YouTube channel. Mary has CF and they share the details of daily breathing treatments, doctor appointments, and the highs and lows of dealing with a chronic illness, both as a patient and a partner. Besides the aspect of Mary’s diagnosis, they share their strong faiths and their beautiful love story as a couple with their 100K subscribers.
This year the Cystic Fibrosis Foundation will be supporting three virtual events created by and for adults with CF to connect and share their experiences. In 2016, a group of adults with CF created BreatheCon, a two-day event that had a powerful effect in connecting community members. This year, in addition to BreatheCon, we are also introducing two CF MiniCons, which are one-day, topic-specific virtual events.
While last year’s BreatheCon was a pilot program, with 188 attendees and limited mostly to word of mouth promotion, this year we encourage you to spread the word about these virtual events to all adults with CF. Please note these events are open only to adults with CF (not to Care Center staff).
CF MiniCon: Transplant – May 21
On Sunday, May 21 from 6:00 – 9:30 p.m. Eastern Time, members of the CF community will be hosting CF MiniCon: Transplant, where adults with CF can have an honest and open dialogue about the transplant process.
This virtual event will include presentations, group chats, and small group video breakouts on a variety of aspects of transplantation that are unique to people living with CF. Discussion will focus on lifestyle, not on medical topics.
All adults with CF age 18 and over are welcome to attend CF MiniCon: Transplant. Registration is open now through May 18 at www.cff.org/minicon. For questions or more information, email email@example.com.
Additional 2017 Events
Please be on the lookout for additional details on CF MiniCon: Young Adult Transition (July 22) and BreatheCon 2017 (September 8-9) in the weeks leading up to the events. If you would like to recommend someone from your community who has CF and is age 18 or over to help plan these events, or if you have any questions, please email Danielle Lowe Cipriani at firstname.lastname@example.org.
We look forward to working with you to support virtual connections for people living with CF.
Drucy Borowitz, M.D.
Vice President of Community Partnerships
Please join us for a FREE private film screening of
UP FOR AIR
Tuesday, May 9, 2017
6:00 – 8:00 PM
Reception followed by screening and Q & A with Jerry Cahill and the film’s Continue reading Please Join Us for a Free Private Screening of Up for Air at CUMC
We’re still celebrating Jerry Cahill’s 5 year post transplant anniversary by giving away his documentary, Up For Air, for FREE through April 30th!
Use discount code “BigAir” to stream!
By Andrea Eisenman
Seventeen years ago I was just going through the motions of trying to keep pushing towards each day with a schedule of treatments, eating, napping, lung bleeds and more treatments. Then starting all over again the following day with Continue reading From Sustaining and Surviving – to Living!
New Cross-Circulation Technique Drastically Prolongs Life of Donor Lungs
Lung transplants remain the only hope for patients suffering from end-stage lung disease. Transplants are often preceded by an extensive period on a waiting list because of a donor shortage, a reality Continue reading New Techniques Drastically Prolongs Life of Donor Lungs
As it turns out the future is now. From National Geographic:
In a remarkable—if likely controversial—feat, scientists announced today that they have created the first successful human-animal hybrids. The project proves that human cells can be introduced into a Continue reading OWN IT: Did Science Find an Answer to the Lack of Organ Donors?
Up For Air, The Inspirational Award-winning Documentary Available for Rent/Purchase
We are excited to announce that the award-winning Up For Air documentary featuring BEF ambassador and 60-year-old pole-vaulting coach living with CF, Jerry Cahill, is now available to rent and purchase on Vimeo. Watch the full movie here:
About Up For Air
The film, directed and produced by Artem Agafonov, was shot over a period of five years, highlighting the “lead by example” and “you cannot fail” attitude of Jerry Cahill as he overcomes the daily challenges of living with CF. Viewers will understand the importance of Jerry’s role as a coach and mentor to pole-vaulting athletes, as well as the sobering reality of Jerry’s daily medical regimen.
The documentary follows the steady decline of Jerry’s lung function, framing his body as a defective machine and pegging time as his ultimate antagonist. When Jerry’s lung capacity decreases to 19 percent, a double lung transplant becomes imminent.
Up For Air gives viewers a glimpse into Jerry’s journey as he transforms and vaults over the many obstacles of this next chapter of his life.
Learn more about Up For Air here.
By Stephanie Rath
My father committed suicide when I was four. Being an only child it was just my mom and I. Thankfully we had help. We moved from North Carolina and into the basement of my grandparents. Being a single mom my mother needed help back Continue reading Asking For Help–Guest Blog