Cystic Fibrosis News Today Weekly Forum Digest

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How Do You Handle Criticism About Your Health?

Jan 08, 2020 08:52 am | Bailey Vincent

Replies: 0
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 Newborn Screening Improves Weight, Lung Outcomes, Study Suggests

Jan 08, 2020 04:33 am | Cystic Fibrosis News Moderator

Replies: 0
A study has found that children diagnosed with cystic fibrosis soon after birth show better lung function, take longer to develop P. aeruginosa, and have better weight outcomes. Read more about these findings here.
What do you think of this news?

Clinical Trials

Jan 07, 2020 10:23 am | Jenny Livingston

Replies: 2
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?