nicholas bell

Yesterday I got a screenshot of the FDA’s approval for what is now Trikafta: I’ve been on the study for the last 10 months — and hearing an actual name (aside from triple combo) is bonkers to me. What’s even more bonkers is how I feel: how my numbers have changed, and the ability to wake up and breathe without a slew of mucus const…[Read more]

Proteostasis Therapeutics or PTI Biotech is a innovative biopharmaceutical company that is helping develop novel CFTR therapies, and more innovative methods of treating CF. Their big theme is approaching CF care from all angles of a patient’s care and also from different parts of the world. I was asked to speak a little on my story with CF and…[Read more]

Last night I was sharing my thoughts on Instagram stories, as I often do. I began reminiscing about childhood and all the things I used to innocently think. It started a dialogue with my CF friends, and we began sharing things related to how we saw CF when we were little, here are two of my absurd childhood thoughts:

1. I was diagnosed late with…[Read more]

Have you seen these stats before, our team at CF News Today came up with this neat infographic of strides recorded by the Cystic Fibrosis Foundation. And, I think it’s pretty phenomenal:

For, me it’s boggling to realize that I am one of those people. I am one of those people who has not only benefitted from the newer medications and…[Read more]

I’ve been dealing with pretty gnarly migraines over the last few weeks. I’m no stranger to migraines, in fact when I was 16, I was admitted because of getting migraines. That admission, I also had an MRI of my head — and, it turns out I have a birth abnormality called Arnold Chiari Malformation — type 1.5 to be exact. It’s the when the

“lower…[Read more]

Head’s up! The CFF hosts an annual virtual event for people with CF for a “weekend of sharing, connecting, and learning as we join together for a free, two-day virtual event to discuss experiences unique to people living with CF.” This year it it is Sept. 20 and 21. Sign up…[Read more]

1. Christina Randall’s channel. She is a becoming YouTuber who has chronicled her experiences in prison with rawness and realness; something totally foreign to me and I think offers a facet of life outside chronically ill life.

2. CG Kid is a recovering poly addict, and talks openly and honestly about drug addiction. Again, it’s something very…[Read more]

I wrote this a few months ago, it’s an unedited culmination of my thoughts on living with CF:

“It’s CF Awareness Month. There are a lot of ways people choose to see their disease, if they even want to see it as a disease.

This is how I feel:

CF has made me confront my own mortality. CF has made me confront mortality of those I love.
CF has s…[Read more]

I think what you consume (whether food, television, news, music, ANYTHING — impacts your mood and perhaps your ability to get better). At the very least, this music helps me feel a bit better, for various reasons (or for no apparent reason) Here are my top songs that I listen to when I feel like sh*t. Link me the music you like when you feel like…[Read more]

Last year I got my first real tattoo. I scheduled an appointment with an artist I had followed on IG and drove 3 hours to get a my piece done by him. After him postponing my original appointment and then kinda forgetting I was coming on our rescheduled date, a resilient best friend, and some coffee: I got my piece.

I won’t leave out the s…[Read more]

Original post here

Hey guys! Today we have Gemma as our WCW! @gem.mcl is 24 years old and is from TX. This is what SHE considers important to her story with CF. ⁣⁣ ⁣⁣

💎I was diagnosed with CF at birth and was able to start treatments right away. My parents balanced teaching me about CF and allowing me to live a full life! I grew up taking…[Read more]

Again! We got another awesome question from @jenny-livingston that is geared towards the guys in the CF community. We both agree, that within our groups for women with CF, dating is such a huge topic for us. Does having CF make dating more difficult — are there any ideas of masculinity that you feel you have to overcome with CF? Do you hesitate…[Read more]

Hi all! A friend, @jenny-livingstonrecently posted several questions about body image (a topic we’re so used to associating with women). But, this time, she wanted to know how body image affects men with CF. More specifically, what’re the ways CF has affected YOUR body image?

So:

1. How has body image affected YOU?
2. Has CF influenced…[Read more]

We all have ways of escaping from the harsh realities that surface with CF. Heck, I’d even say the everyday, mundane realities that are a part of CF need a form of escapism. I think for me, what helps me is writing and connecting with myself — whether that’s through spending time on the trails, or meditating, or working out. I think making an ef…[Read more]

Every week, we feature a Man Crush Monday on our CF News Today Instagram channel. This week we had Sean, and here is what he had to say:

Hey y’all! We’re back from our MCM break and so stoked to have Sean! @sean_wiere is 24 years old and is from Oahu, Hawaii! Here are three things that are important to HIS story with CF. Be sure to answer his…[Read more]

I came across this <a href="http://“>video again today, and every time I see it — I always find myself in awe. Thought I’d share.