Cystic Fibrosis News Today Weekly Forum Digest

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Sleep Tight, CF Community

Mar 19, 2019 12:34 am | Cystic Fibrosis News Moderator

Replies: 0
Did you know that you will die faster as a result of lack of sleep than lack of water or food? That should tell you how important sleep is for the human body, and this is a lesson Luisa Palazola’s dad tried to drill into her head from a very young age. Now that she’s older, Luisa has a better appreciation of the importance of sleep and how the lack of it has negatively affected her health at various stages in her life.
Click here to read more from Luisa.
Do you have trouble sleeping? Do you notice that your health suffers when you don’t get enough sleep? If you’re currently struggling with too much or too little sleep, have you talked to your doctor about it?

Coping with a bad CF appointment

Mar 18, 2019 04:08 pm | Tré LaRosa

Replies: 0
Today, I had a bit of a negative CF appointment that I didn’t foresee coming. I was pretty disheartened, but I’m hoping it’s a small bump and that I’ll be able to recover quickly.
1. How do you cope with a negative appointment?
2. What is considered a “negative” appointment to you?

"Five Feet Apart" Reactions

Mar 18, 2019 04:07 pm | Tré LaRosa

Replies: 0
So “Five Feet Apart” finally came out last Friday.
1. Have you seen it? Do you plan on seeing it, if not?
2. What are your opinions on it?
3. What do you hope happens in the aftermath?

The Cystic Fibrosis Community Has Mixed Feeling About ‘Five Feet Apart’

Mar 18, 2019 05:49 am | Cystic Fibrosis News Moderator

Replies: 0
“Five Feet Apart” is creating a buzz on social media in the CF community. Some people love the movie, but others have mixed feelings. Click here to read about how the CF community is reacting to the movie online.
Have you seen the movie yet? Are you planning to watch it? What do you think about how it portrays young people with CF?

Lung Enzyme Cathepsin S is New Therapeutic Target for CF and COPD

Mar 18, 2019 05:36 am | Cystic Fibrosis News Moderator

Replies: 0
Blocking the enzyme cathepsin S can alleviate symptoms and reduce lung damage in CF and COPD, according to research led by Queen’s University Belfast. Click here to learn more.
What are your thoughts on this news?

Becoming friends with people with CF

Mar 15, 2019 02:06 pm | Luisa Palazola

Replies: 0
In an ironic twist of fate, some of my best friends are people with CF. I think it’s pretty clear why these people have become my best friends — sharing a destructive and chronic illness — is a pretty intimate bond in itself. It’s also incredibly saddening that, should I ever travel to their cities or countries, I can’t hang out out with them. I can’t go to dinner, get a beer, or spend the day with them. Even though, it would be guarenteed an awesome experience.
But, these are also relationships that highlight the fact that you don’t have to see someone everyday for them to be your best friend. That, loving someone doesn’t require their physical presence. And, being there for someone is possible without being able to hug on them. For these people, I would do anything — except exist within 6 feet of them.
It hurts sometimes, but at the same time:
It magnifies the brilliance in connections with others, its questions our ideas of what friendships should look like, and underscores the limitless capacity of loving someone.

CF Community: Don’t Neglect Self-Care as You Mourn Deaths

Mar 15, 2019 03:25 am | Cystic Fibrosis News Moderator

Replies: 0
With frequent deaths in the cystic fibrosis community, it’s essential to practice self-care in the midst of grieving. Click here to learn more about the importance of self-care when grieving.
What does self-care look like for you?

Dating with Cystic Fibrosis: It’s Better to Be Open

Mar 15, 2019 03:23 am | Cystic Fibrosis News Moderator

Replies: 0
Uncertain about how to approach dating when you have cystic fibrosis? Luisa Palazola shares her advice on the matter. Click here to read more from Luisa.
How has living with CF impacted your outlook on and approach to dating? Do you agree with Luisa that being open and upfront about your illness is important?

CF Patient Is Ready for His Fourth Boston Marathon

Mar 15, 2019 03:22 am | Cystic Fibrosis News Moderator

Replies: 0
Joshua Skampo has cystic fibrosis and he is currently preparing to run his fourth Boston Marathon on April 15. As part of his training, Joshua logs up to 75 miles in his weekly training sessions. Read more about Joshua’s incredible running journey here.
Have you ever thought about running a marathon? Do you have any encouraging words to share with Joshua as his race approaches?