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what is youWhat is your daily retreat from the struggles of this disease?

Aug 19, 2019 12:31 pm | Luisa Palazola

Replies: 0
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 effort to work on me using my mind or body, allows me to separate from the disease and any other difficult things I deal with. But, I think it’s really important to also find a space to process, accept and let go of the hard stuff too. Even though with CF that often means revisiting and reanalyzing the hard stuff, because it kinda never goes away.
So what is your daily retreat from the struggles of this disease?

MCM Sean

Aug 19, 2019 06:39 am | Luisa Palazola

Replies: 0
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 question in the comments below! ⁣⠀
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🏼‍♂️ I was diagnosed at age 5 due to an emergency appendectomy. I was in secret denial of my disease until I joined IG and found all the love and support from the CF community. I believe mental health is extremely important in staying healthy with this disease, which in times is impossible to avoid negativity and stress. The stresses of a man being masculine, a provider, and a valuable communicator on top of the long list of CF difficulties adds up!⁣⠀
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🏼‍♂️ I currently live on Oahu getting my Master of Science in Molecular Bioengineering at the University of Hawaii, Manoa. I found science to be extremely challenging and interesting. Getting my B.S. in Biology is so far the biggest accomplishment of my life considering the difficulties I have had with passing science courses in high school. My dream is to work in a huge biotech lab and be on the front page of Times magazine for curing a disease. I am getting married next year on the Gold Coast to my beautiful Aussie fiancée! She’s aight ;)⁣⠀
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🏼‍♂️ I grew up surfing at the ripe age of 5, and also played multiple sports including wrestling, golf, and basketball. Surfing and the ocean is my life! I believe it is the main reason as to why, in CF terms, I am relatively “healthy”. My daily ocean retreat from the struggles of this disease day to day is essential. The amount of mucus I get up is disgusting to everyone around me in the water and I use it to my advantage to get the best waves. I am extremely lucky to have grown up on the southern coast of California and currently shred the big waves of the north shore on Oahu! I will soon return to California once I graduate with my master’s degree next year.⁣⠀
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What is your daily retreat from the struggles of this disease?

Yes There is Bullying in the Chronic Illness Community

Aug 14, 2019 05:22 am | Cystic Fibrosis News Moderator

Replies: 0
Columnist Bailey Anne Vincent addresses bullying in the chronic illness community and the importance of respecting people’s journeys. Read more from Bailey here.
Have you ever been bullied inside your “own” community? What was that like? How did you respond to the bullying?

How Much CF Do You Choose to Show?

Aug 14, 2019 05:21 am | Cystic Fibrosis News Moderator

Replies: 0

Columnist Elly Aylwin-Foster talks about when she decides to show her disease and when she chooses to keep her condition private. Click here to read more from Elly.
What do you think of this column?

European Initiative Targets Diagnosis, Treatment of Rare Diseases

Aug 14, 2019 05:20 am | Cystic Fibrosis News Moderator

Replies: 0

Click here to learn more about the EU’s €101 million initiative to speed the diagnosis of rare diseases and accelerate development of therapies in 35 countries.
What do you think of this news?

Pancreas-on-a-chip Expected to Shed Light on CF-related Diabetes

Aug 14, 2019 05:19 am | Cystic Fibrosis News Moderator

Replies: 0
Scientists created a miniature human pancreas-on-a-chip that may help identify the cause of cystic fibrosis-related diabetes, a common complication of CF. Click here to read more about it.
What do you think of this news?

Minimally Invasive Imaging Device Shows Changes in Nasal Airways in CF

Aug 14, 2019 05:17 am | Cystic Fibrosis News Moderator

Replies: 0
A minimally invasive imaging device that creates high-resolution images of nasal airways allows researchers to visualize cellular level changes in CF. Read more about it here.
What do you think of this news?

Don’t Just Say I’m an Inspiration, Tell Me Why

Aug 14, 2019 05:16 am | Cystic Fibrosis News Moderator

Replies: 0
Columnist Wendy Caroline explains that while she appreciates it when people tell her that she’s an inspiration, she prefers when they tell her why. Click here to read more from Wendy.
Do you like to be called an inspiration? Why or why not?

2 CF Mutations Corrected Using CRISPR Gene Editing Tool, Study Says

Aug 14, 2019 05:15 am | Cystic Fibrosis News Moderator

Replies: 0
Using the CRISPR gene editing tool, researchers were able to permanently correct two CFTR gene mutations in cells derived from cystic fibrosis patients. Read more about it here.
What do you think of this news?

Our Relationships with Our Doctors Are Stronger When We Self-advocate

Aug 14, 2019 05:14 am | Cystic Fibrosis News Moderator

Replies: 0
Columnist Tré LaRosa discusses the importance of being a self-advocate while maintaining a good relationship with his medical care team. Click here to read more from Tré.
What did you think of this column? Do you self-advocate? How’s your relation with your care team?