Cystic Fibrosis News Today Weekly Forum Digest

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Preferred method of airway clearance

Jan 13, 2020 07:55 am | Jenny Livingston

Replies: 0
I grew up in a time when manual CPT was the gold standard of airway clearance for people with CF. My parents would “pound” three kids (my sisters and I) multiple times a day — their forearms must have been ripped!
I got my first Vest when I was 13(ish) years old and it has been my go-to for airway clearance ever since. I also like to throw in some huff coughing and PEP therapy.
The thing is, each of us have a preference when it comes to airway clearance and that’s totally okay! There is no “one size fits all” approach.
What is your preferred method of airway clearance?

How Do You Handle Criticism About Your Health?

Jan 11, 2020 01:56 am | Bailey Vincent

Replies: 1
QUESTION: How do you handle criticism about your health and body?
I wrote a column discussing my anxiety with encountering trolls online, and can’t help but wonder… how does one become a troll? Do trolls even know they’re trolls?
In my case, the most negative people are often those that are also sick, despite assuming we’d be the most compassionate. We should know, above everyone else, that no one experiences sickness or its impacts in the same way. And, frankly, no one should.
So why do we all criticize one another for being even the slightest bit different? What has that ever achieved in the history of achievements?
Even so, we are all entitled to our opinion. Heck, if someone said I’m a terrible writer, or bad dancer, or had questionable bone structure, or use too many ellipses… I would understand their right to these feelings. However, when someone attacks another for their actual biology- their genetic material and mass- I don’t really get the point?
Can I take that critique and fix my DNA? Nope. Can I make you feel better about what I can’t control (my body), which in no way impacts you and your body? Not really.
I would much rather be disliked for the great many things I need to work on and improve (ellipses not withstanding), than for the matter that doesn’t really matter to most.
What about you?

CF: Vertex, Ireland Reach Agreement for Reimbursement of Triple Combo

Jan 10, 2020 06:29 am | Cystic Fibrosis News Moderator

Replies: 0
People with cystic fibrosis in Ireland may be among the first in Europe to access Vertex Pharmaceuticals’ regimen of elexacaftor, tezacaftor, and Kalydeco. Read more here.
How do you feel about this news?

CF Warrior — what does that mean?

Jan 10, 2020 04:48 am | Jenny Livingston

Replies: 0
“Warrior” is a word used frequently in the CF community and chronic illness community at large. And when I look at the individuals and families fighting this disease, warrior seems to be a very fitting term. The battles fought against this disease are strenuous, harrowing and all to often, entirely unfair.
But even though I fight many of the same battles, I don’t think of myself as a warrior. In fact, it makes me a little uncomfortable when someone uses that term to describe me. There is a dissonance there. I don’t feel like a warrior. I don’t always handle this disease gracefully and, oftentimes, I don’t feel very strong.
Maybe that’s precisely what it means to be a warrior — to keep fighting even when you’re scared or weak.
What are your thoughts on all this? Do you consider yourself a CF warrior? If you’re like me and the term makes you uncomfortable, why do you think that is?

Clinical Trials

Jan 09, 2020 10:35 am | Jenny Livingston

Replies: 3
In 2013, someone approached me in clinic and asked if I wanted to participate in a clinical trial. I didn’t have a clue what I was getting into, but the appointment schedule wasn’t too rigorous and I didn’t have much else going on at the time, so I agreed.
The first trial was very short-term, but it led to other amazing opportunities. I was soon asked to participate in a trial for a CFTR modulator, which ended up being Orkambi. (I wrote about how this trial changed my life here.) Since then, I’ve participated in clinical trials as often as I am able to. It’s one of my favorite things, which might sound a little funny, but it’s true!
I love being able to participate in research! I’ve learned how invaluable the results of these trials are, and it feels good knowing that I’m helping make a difference. Also, I see my doctor more regularly when I’m in a study, which means we keep an even closer eye on my health, and it’s helped strengthen our relationship and mutual trust.
If you’re interested, you can use the Clinical Trials Finder on cff.org to find a trial in your area. Or talk to someone at clinic to see if there are trials taking place at your center.
Have you participated in clinical trials? If so, what has your experience been?