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Sometimes I feel like at the mere age of 25 I’ve had my fair share of trauma and death. I know as I type this, I have no idea what tomorrow will bring and that sadness related to death probably won’t stop.

And, because of all of this. Whether it’s my own trauma from nearly bleeding out my lungs or losing a friend to this disease. I wonde…[Read more]

Cystic fibrosis patients with mutations in the HFE gene have poorer lung function and a higher risk of other complications, a study says. Read more about this study here.

What are your thoughts about this study and its findings?

Bailey Anne Vincent reflects on perceptions of emotional and physical scars and how she has grown to appreciate their beauty. Read more from Bailey here.

Do you have any scars? If so, are they visible to others? How do you feel about your scars?

How Do We ‘Speak CF’ in a Way that Connects Us?

Talking with your friends and people outside of the CF sphere about CF often…[Read more]

I’m on a really exciting trial that has rocked my world, and dare I say, kept me healthy?

I think because I’ve spent so much of my life sick and in bed and feeling like sh*t, that sometimes I get really overwhelmed by the day to day “healthy life.” That I want to retreat to that feeling I know so well, that I know how to handle. I know how t…[Read more]

Elly Aylwin-Foster would like us to consider how cystic fibrosis affects careers. Click here to read Elly’s thoughts on this subject.

What do you think? How has having CF impacted your career and ability to work?

And, no not in that way. No one said dating was easy, but dating with CF is a weird balance of how vulnerable am I going to be? Honestly, working within CF, having a pair of lungs tattooed on your arms, and living with a terminal lung disease also make it increasingly difficult to not be open about CF. However, a lot of people don’t care and it be…[Read more]

A contentious topic in America and, obviously, in rare disease communities as well is for-profit healthcare. I have strong opinions that healthcare itself, as an industry, should not be for-profit. It makes me extremely uncomfortable to think about pharmaceutical companies, insurers, or hospitals profiting of our disease and our sickness. I do…[Read more]

Bacteria species of the genus Streptococcus and Haemophilus are the most common in the airways of children with cystic fibrosis during their first two years of life. Click here to learn more about this topic.

Have you had experience with these bacteria in your lifetime or your child’s lifetime? What was that like?

An Open Letter to the ‘How Are You Feeling?’ Folks

Columnist Janeil Whitworth, I think sums up how confusing this question is. For me, I get overwhelmed with this question. I wonder often, is that all people think when they think of me, my health? But, at the same time, I’d also prefer they ask about my health, b…[Read more]

To be our most healthy self, we have to allow our bodies to heal, relax, and gain strength. This means doing our treatments taking our meds as consistently as possible, getting rest, drinking water, exercising (within our limits), and other things. But it also means recognizing when we’re trying to do too much and allowing ourselves a break.

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In the European Union, Synspira’s cystic fibrosis therapeutic candidate, SNSP113, has been designated as an orphan drug by EMA. Click here to read more about this decision.

What do you think of this news?

Pollen, spring, and general crumminess. I don’t know about you, but while I love the birth of life that spring brings. It also comes with severe allergies for me, that make me feel awful. I’m on two different allergy meds, and am wondering if I need more in my arsenal.

1. Do your allergies affect your CF?
2. How do you deal with allergies ove…

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I’ve found that since I try so hard to always be optimistic and “strong,” that I’m not as likely to reach out for help, advice, or just to vent.

1. Are you comfortable asking for help?
2. What about for advice or to vent?
3. Why or why not? Is there anybody you do feel comfortable reaching out for help?
4. What do you wish others understood…

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CFTR2 is a website that provides information for patients, researchers, and the general public about specific variants in what is commonly referred to as the cystic fibrosis (CF) gene.

https://www.cftr2.org/welcome

Click here to read Brad Dell’s reflections on the moments of encouragement and grief that fuel his motivations for sharing his story as publicly as he can.

Can you relate to Brad? Do you want to share your story? If you do, tell us a bit about yourself in the comments – we’d love to hear from you.