Cystic Fibrosis News Today Weekly Forum Digest

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Infertility and Cystic Fibrosis

Jul 02, 2019 03:35 am | Cystic Fibrosis News Moderator

Replies: 0
Surprise news at the doctor’s office recently prompted columnist Tré LaRosa to research infertility and cystic fibrosis. Read more from Tré on this topic here.
Has having CF impacted your outlook on having children of your own?

Late nights

Jul 01, 2019 05:28 pm | Tré LaRosa

Replies: 0
I remember back in the day in college when I could handle late nights easily. Doing treatments late, going to bed, getting up early wasn’t that difficult.

I’ve learned that I can’t handle nights like that anymore and that my body just betrays me in the morning.

At what age did you realize you started to feel much differently about your physical ability to do thisngs?
What have you done to compensate, if anything?
What time do you try to do your treatment?

Chronic pain

Jul 01, 2019 10:43 am | Tré LaRosa

Replies: 2

In my opinion, one of the most under-discussed topics in the CF community is chronic pain.

Have you struggled with chronic pain? Where was it localized?
Did you feel like you were properly taken care of, or at least listened to?
Do you feel like it’s appropriately discussed? Or should be more so? Less so?

MCM Michael

Jul 01, 2019 10:39 am | Luisa Palazola

Replies: 0
Each week we feature a dude in the CF community on our IG channel, to see original post click here.
Oi! It’s our first MCM of July and we’re STOKED to have Michael to tell us 3 important things about his life with CF. @mshea1990 is 29 years old and is from Stanford-le-Hope, Essex. Remember to answer his Q in the comments! ⁣⁣
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I was diagnosed with CF at 11 years old and my parents were made to feel paranoid about my stomach aches growing up. In my last year of primary school I suffered my first chest infection and was bed bound for two weeks. Coincidentally, my sister was studying CF in biology, she brought her book home and relayed the symptoms to my parents. Realising that this may be a possibility, they returned to the doctors and thus I was finally diagnosed. Those 11 years without medication, I truly believe, have made me stronger! ⁣⁣
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I was a very active child and believe that my love of football kept me healthy as it’s all I would play growing up. My lung function was always in the high 90s! I was in my first year of college at 16 years old when my lung function started to drop rapidly without my doctors being able to understand why. This went on for a year until I coughed up roughly a pint of blood while working out at the gym! I was put on IV’s and booked in for a bronchoscopy the next day. My lung function had dropped to 21%. We discovered that I had a Mycobacterium abscessus that had been destroying my lungs for a year and caused irreversible scarring. I underwent IV treatments for 18 months…this totally flipped my life, my routines and me as a person! This was the first time I felt the mental side effects of CF and my mental health was affected. ⁣⁣
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Since my last admission (10 years ago) I have maintained a stable lung capacity at 50%. I am happily married and work full time (not so happy ). We have our own home and look forward to the future – ideally traveling a lot more of this amazing world. When I walked out of the hospital the last time I vowed to keep myself as well as possible and will continue to do so for the future. ⁣⁣
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I believe that Cfers are given this life as we are strong enough to handle it, and truly believe that it’s up to us to make the best of the bad hands that we are dealt. How do you make your hand better?

Prolonged Use of Inhaled Antibiotics to Treat P. aeruginosa May Raise Risk of Fungal Infection in Kids with CF

Jun 28, 2019 04:30 am | Cystic Fibrosis News Moderator

Replies: 0
Long-term use of inhaled antibiotics to treat lung P. aeruginosa infections can raise the risk of Aspergillus infections in young children, a study reports. Read the rest of the story here.
What do you think of this news?

Crossing the Line

Jun 28, 2019 04:28 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read about Elizabeth Rogers’ recent discomfort at being an object of pity after ‘crossing the line’ from invisible illness to one that is more visible.
What did you think of Elizabeth’s column? Can you relate?

Orkambi Shown to Improve Exercise Tolerance in Adults With Severe Cystic Fibrosis

Jun 28, 2019 04:28 am | Cystic Fibrosis News Moderator

Replies: 0
According to a study, Orkambi significantly improves exercise tolerance in adults with severe cystic fibrosis, as early as four weeks after treatment. Read more about this study and its findings here.
What do you think about this study and its findings?

Kalydeco Effective for CF Patients in Real-world Setting

Jun 28, 2019 04:26 am | Cystic Fibrosis News Moderator

Replies: 0
A real-world study showed that Kalydeco preserved lung function and nutritional status for up to five years in CF patients treated in a clinical setting. Read the full story here.
What do you think about this study and its findings?

UK’s Cystic Fibrosis Trust Wants You to Wear Yellow

Jun 28, 2019 04:25 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to learn more about ‘Wear Yellow Day,’ an annual event that encourages people in the UK to support cystic fibrosis research and awareness through their clothing choices.
Did you participate in Wear Yellow Day? Post a picture and let us see your outfit!

What Does Snail Slime Have to Do with Cystic Fibrosis?

Jun 28, 2019 04:24 am | Cystic Fibrosis News Moderator

Replies: 0
Small antimicrobial proteins in the mucus of brown snails may open the door to new treatments for cystic fibrosis, a study reports. Read the rest of this interesting story here.
What do you think of this study and its findings?