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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?

WCW: Emmanuele

Feb 05, 2020 08:25 am | Jenny Livingston

Replies: 0
Hi friends, for today’s WCW — we’re doing something a little different. Today we have Emmanuele, who is 22 years old and is from Rondonia, Brazil. We asked @emmanuele.machado to share a little of her story with CF, while living in Brazil. Be sure to answer her Q in the comments:

I’m 22 years old and live in Vilhena, RO. I’ve spent a lot of my life coughing up blood, but in spite of it, love watching Naruto while doing nebulizers, eating bread with meat, and singing out loud while dancing and when I’m home alone! I want to say, warriors never give up.

Here in Brazil, we don’t have access to new medications. A few people do get them (new medicines) but only through many battles in court. But, those are only a few people. We fight everyday, kill lions with our own teeth. We face death more times than we can deal with. We fight lack of medication, lack of information, we appeal to the justice system, and learn both medical and legal terms. We fight so much, we sometimes end up violent.

Last night I had a dream that I was admitted in the hospital, and I received news that Trikafta was almost the cure. I cried a lot. It was only a dream — I do hope that I am able to use Trikafta, alongside my CF friends here. Right now, in Brazil we have a campaign to register Trikafta in the Brazilian equivalent to the FDA (Anvisa). We have been campaigning a lot, and even started a hashtag to help build attention to the issue. #registravertex
Question: What REALLY matters to you?

What Does CF Even Look Like?

Feb 05, 2020 08:21 am | Bailey Vincent

Replies: 1
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?

MCM: Vinny

Feb 05, 2020 08:02 am | Jenny Livingston

Replies: 2
We’re back with Vinny as our MCM! @vincenz99 is 30 years old and from NY. Here are a few things that’re important to his story with CF.

I was diagnosed with CF at 6 months old, soon after the discovery of the CF gene. Luckily, my family didn’t let this grim diagnosis & unknown future keep me from living the life of a normal kid. I was always active; played sports; and loved all night video game sessions. I was lucky enough to be a relatively, healthy, normal kid for the majority of my childhood and teenage years. I had aspirations of becoming an artist or an actor, a teacher, then an obstetrician. You can imagine the looks on the faces of my family and friends when I became an accountant (I hated math class growing up!).

As a young adult, there were times when I found myself battling mild depression. The Internet can expose the grim realities of this disease and create a firestorm of “what if” scenarios. I wanted to live a full life; I wanted to have a family; I wanted to see this disease cured. Thankfully with the support of my parents, family, and friends, I have learned to not sweat the small stuff and to live each day to the fullest. Mental health and CF go hand in hand: never underestimate the power of a positive outlook.

Starting Trikafta was easily one of the best days of my life, so far. This drug is nothing short of a miracle. My weight and functions have skyrocketed; my outlook on life has improved; and for once, I never cough. Thanks to Trikafta, I am slowly getting back into my gym regime and hope to run a 5k marathon in the near future. I am also back into hobbies that I haven’t been able to do in quite some time — kickboxing, hockey, cycling, and lifting. I can also sing (badly) in the car now without hacking up a lung in the process. With my new lease on life, I want to continue raising awareness for CF and the wonders of this drug. I want every patient who can benefit from this drug to get it ASAP! In non-CF news, I love binging movies & television on my free time; I am an avid NHL fan; I speak multiple languages; I love going to the gym; and I love to reminisce about 90s Nickelodeon.
Question: CF doesn’t define us. What is a hobby you enjoy that helps you live with CF?

Trikafta guilt

Feb 05, 2020 07:58 am | Jenny Livingston

Replies: 2
I’ve talked before about the guilt I feel for having access to a “miracle drug” (Trikafta) when others, including some of my very good friends, don’t. Whether it’s due to genetics, geography or insurance issues, I feel deeply for those who are watching from a distance — seeing others benefit from a drug they’re unable to take.
It causes some complex emotions. As I’ve started experiencing some benefits myself, I haven’t known if sharing them is the right thing to do. I’m generally an open book. Too open at times, if you ask my partner. But it’s difficult for me to share my successes when I know others don’t have the same opportunities. Why am I experiencing so much guilt and inner conflict?
If you’re on Trikafta, do you ever feel guilty for having access when others don’t? If you’ve benefitted from Trikafta, do you feel comfortable sharing that success openly?
And if you’re someone who is unable to take it, how do you feel about hearing these stories? Do you enjoy them, or are they painful to hear?
I’d really like to know what you think!

Help: I Am an Anti-Germaphobe Who’s Becoming a Germaphobe

Feb 05, 2020 04:51 am | Bailey Vincent

Replies: 1

I have never been a “germaphobe”, despite our predisposition for infections and sickness. I always thought that stressing about what we can’t control only causes more stress. Sometimes I’m even a little negligent in caring because I don’t want to be ‘that person’ who’s always stressed about germs and her health, when the world spins on without me.
I have two kids (if you didn’t know, kids be disgusting), a husband who works in the school system, and I teach dance most nights. Still, with all the flu and strep that’s going around my area right now, I can’t help but feel super vulnerable and nervous about catching something on top of my many somethings… especially because I’m on IVs and still getting “back on my feet” (metaphorically speaking).
This weekend I return to my job(s)- working very long dance hours, surrounded by large groups of people, concluding with a special black-tie gala for my dance company. Basically: so so so many humans.
I normally wouldn’t be nervous, but this time… I am. And I’m sort of embarrassed about that, because it’s so against my “laid back” attempts at personality and wellness.
Do you ever find that your reactions change over time? Or that you become anxious about things you wouldn’t have in the past?

Reflecting on My Favorite Columns of 2019

Feb 05, 2020 03:41 am | Cystic Fibrosis News Moderator

Replies: 0
Tré LaRosa shares his top five columns from 2019 and explains the motivating force that compelled him to write each one. Click here to read more from Tré.
Which one of these columns is your favorite and why?