Cystic Fibrosis News Today Weekly Forum Digest

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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator

Replies: 0

Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news?

When Do You Worry: Sick Versus Sick-Sick

Feb 10, 2020 07:57 am | Bailey Vincent

Replies: 0
So I’ve been out of the hospital for a few weeks now. I did home IVS, and within a week of stopping them, I started to come down with something. I am now going into my second-full week of feeling completely bogged down with this bug, and it’s showing no signs of going away. My cough is worse. My muck is worse. But I also struggle with knowing when I want to complain to my doctors, because I just finished treatment, and I’m currently on steroids and a good range of medications. I tend to think: “Why bother?”
Question: When do you finally raise the flag to your providers about not feeling well?
Is it based on symptoms or is it based on duration? For me, the fact this isn’t going away after so many days is what’s wearing me down (though I see my ENT in a couple of days).
I’m curious how often others report to their CF clinic, or when you simply say, “eh, it’s that time of year” and wait it out instead

“What Makes Me Rare” CF Challenge

Feb 10, 2020 07:15 am | Jenny Livingston

Replies: 0

At CF News Today, we are celebrating Rare Disease Day, which is February 29. It is a day when we shout loud and proud to the world that we have forged uniquely powerful identities through the odysseys of our conditions. It’s the day we demand more awareness, more action, more compassion. Let’s flood the internet with our voices to make our strength known!
So, you’re probably wondering, how? We’re thinking of a video montage.
Your voice is powerful and carries ripples to not only our communities, but expands to general societies. With your voice, we want to create a video montage at the end of the month of all people from different rare disease communities, showing and telling us why you are rare. So, if you are comfortable, we are taking video submissions. (However, we will be posting written #WHATMAKESMERARECF stories throughout the month of February.)⠀
1. For videos:
Get your selfie cam out and tell us who you are, where you are from, and most importantly what makes YOU are rare. Post on your IG, and tag us in the video! Don’t forget to share it using the hashtag #WHATMAKESMERARECF⠀
Note: we will be creating a video with all the participants. If you want to be be part of this initiative email us your video to socialmedia@bionewsservices.com and be sure to use “What Makes Me Rare CF” in the subject line.
2. For written submissions:
Written submissions: tell us who you are, where you are from, what your rare disease is, but most importantly why YOU are rare. And, send us a photo of yourself — we’ll be sharing throughout the month of Feb! When you post on your IG, tag us in and don’t forget to share it using the hashtag #WHATMAKESMERARECF
Email all submissions to socialmedia@bionewsservices.com and be sure to use “What Makes Me Rare CF” in the subject line.

Bad Days: Are They Contagious?

Feb 07, 2020 11:23 pm | Bailey Vincent

Replies: 2
Yesterday I wrote on Instagram about “crying in cars”, and was surprised how many amazing women replied that they also do the same thing throughout the week. Although it’s just a metaphor (I tend to cry secretly in the bathroom instead), the feeling seems to be the same: life is super hard and there is very little outlet for the harder moments as grown-ups. Whether parent, professional, or patient… Is adulting this hard for everyone?
One of my dancers couldn’t make it to rehearsal this week because she was having an epically bad day, and felt like she was failing. She described an overwhelming feeling of dread- as if something bad was about to happen- despite how much she’d been hustling and bustling all month. “Stay home,” I said via text, without thinking twice, “No guilt. You need this. Stay home.”
You’d be surprised how many of my adult professionals experience this with no one to talk to. They’ve hit a wall and need someone to just let them off the hook. And, more often than not, if one of them is having a hard time, I find a way to regulate my own inner turmoil to balance them out.
Stepping up to support is so much easier than wallowing in my own comparisons, but… sometimes bad days can definitely feel contagious. Even though we get habituated into thinking that being a “sick person” is harder than what others experience on a day-to-day basis, if there is one thing I’ve learned from working with an amazing group of women (and posting about crying in cars), it’s that: We all feel this way.
We all have bad days. We all feel like we are failing. We all feel like we have hit a wall.
Question: How do YOU deal with days like this?

What is your family structure?

Feb 07, 2020 08:47 am | Jenny Livingston

Replies: 0
Yesterday, I posted this little video of my sisters who made a little appearance on the news in 1986. I got several responses like, “I didn’t know you had sisters with CF” or “what was it like growing up with multiple CF kids in the house?”
Both my older sisters were born with CF. After they were born, my parents had two boys (my older brothers) who did not have CF. And finally, I came along — the baby — with CF.
Growing up, CF was the norm in our household. It’s all we knew! When we were kids, the dangers of cross-infection were not known, so my sisters and I were very close and no precautions were taken to prevent us from spreading “CF bugs” back and forth.
My oldest sister, Shannan, passed away at the age of 14 while awaiting lung transplant. Teresa (my other sister) and I are very close, but as we got older and began culturing different strains of bacteria, we became more careful about spreading infection.
What is your family structure? Do you have siblings with CF? Or if you’re a CF parent, how many of your children have CF? How has cystic fibrosis affected your family dynamics and familial relationships?

I Let CF Win When I Gave Up My Veterinarian Dream

Feb 07, 2020 02:43 am | Cystic Fibrosis News Moderator

Replies: 0
Elizabeth Rogers shares her regrets about giving up her goal of becoming a veterinarian because of cystic fibrosis challenges. Click here to read more from Elizabeth.
Is there anything your regret not accomplishing? If so, what?

What Does CF Even Look Like?

Feb 06, 2020 02:13 pm | Bailey Vincent

Replies: 2
Yesterday I wrote a column about what it means to “look sick” or “look Deaf.” There are a surprising amount of CFers with hearing loss, and a great many others with secondary disabilities or illnesses, and each one seems to come with a certain stereotype in the public perception of what they should or shouldn’t look like.
I never mind being told that I don’t look sick (technically that’s a compliment?), but I never understand why it needs to be said at all (especially when clearly stuck in the hospital or said by healthcare professionals). Overall though, it’s always coming from a nice place, and I always love a good compliment!
But I have been told I don’t “look Deaf” more times than I can count, and it always makes me want to say: “What does Deaf look like?” I know the stereotype of what CF “looks like” (normally relating to posture, weight and height), but I also know many who defy said assumptions. I only have a couple of clubbed fingernails, not all of them. I am definitely on the smaller side with skinny ankles, but I also have hips. My spine is compressing over the years, but I am not particularly barrel shaped (guessing constantly engaging the muscles for dance posture over the years helped a little with this one).
We don’t all fit the bill as it did in a medical book 20 years ago, and I wish there was more education on that overall.
Question: What is one way that you “defy” the typical CF or sick stereotype?