Cystic Fibrosis News Today Weekly Forum Digest

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When should we talk about our CF? (For men.)

Apr 02, 2019 01:46 am | Tré LaRosa

Replies: 0
I was recently talking with a friend and realized that almost any time I meet somebody, they know within the first couple of minutes that I have CF. This is due to my having tattoos relating to CF, and the fact that my writing and day-time job are also centered around CF. I’m not so much saying it quickly just because, but because it’s so much a part of my life that it’s hard not to bring it up quickly. I don’t really know how to go about this differently or that I even should lol. It’s just something I’ve thought about. This can also be hard for men to be open about something so emotionally difficult.

How quickly do you tell people you’re friends with about your CF?
Do you prefer to being open about it early on in friendships or later?
How open are you about CF?

Costs for CF Therapies Are Going Up in 2019

Apr 01, 2019 11:55 pm | Cystic Fibrosis News Moderator

Replies: 0
Costs for approved cystic fibrosis (CF) treatments and new approvals — including therapies extended to more age groups or targeting new mutations — could double in price in 2019, according to pharmacy benefit manager Prime Therapeutics. Click here to find out more.
How do you feel about this prediction? Are you prepared to pay more for your treatments?

Questions for doctors, for adult CFers

Apr 01, 2019 04:33 pm | Tré LaRosa

Replies: 0
I work closely with doctors (this was my column today). It’s been enlightening to be able to talk to them behind the scenes and ask them valuable questions. I’ve gained a lot of insight.

If you had the ability to freely ask a CF doctor any question, what would it be?
What are some things you’d want your doctor (and other CF doctors too) to know? (If you could tell them anything.

(If we could arrange it, it may be cool to host a livestream Q&A with doctors in the future, so this would be a good place to start!)

Triple Combo Therapy Shown to Significantly Improve CF Lung Function

Apr 01, 2019 01:29 am | Cystic Fibrosis News Moderator

Replies: 0
Treatment with Proteostasis Therapeutics’ triple combo therapy regimen may significantly improve the lung function of patients with cystic fibrosis (CF), results from a Phase 1 clinical trial suggest. Click here to find out more.
Are you interested in this treatment?

Xolair May Treat Lung Allergic Reactions Caused by Fungi

Apr 01, 2019 01:27 am | Cystic Fibrosis News Moderator

Replies: 0
Xolair, used for allergic asthma and chronic hives, may treat lung allergic reactions caused by fungi in cystic fibrosis patients, a case study suggests. Click here to learn more.
What are your thoughts about this news?

Maya Angelou on Life’s Breathtaking Moments

Apr 01, 2019 01:23 am | Cystic Fibrosis News Moderator

Replies: 0
What do you think about this quote from Maya Angelou? “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”
Breathing is the number one priority for people with cystic fibrosis. Do you find this quote inspirational as a person living with CF? Why or why not? What other quotes do you like?

CF Patients Are Living Longer, But Heathcare Costs Are Rising Too

Mar 30, 2019 01:25 pm | Cystic Fibrosis News Moderator

Replies: 1

People with cystic fibrosis are living longer than ever, yet spending on healthcare for CF has exploded in recent years — with expenditures on medications alone jumping from an average $24,959 per patient in 2009 to $44,529 in 2015.
Unfortunately, many people with CF continue to struggle to pay for their healthcare. Click here to find out why this is happening and what might be done to fix this problem.
How do you pay for your medications and other healthcare needs? Have you had any issues with insurance that you would like to share with us?

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Mar 30, 2019 01:21 pm | Ryan Golley

Replies: 0
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Jennifer’s Cystic Fibrosis Story: A Life of Beauty and Loss

Mar 29, 2019 01:42 am | Cystic Fibrosis News Moderator

Replies: 0
Jennifer Shannon fought Cystic Fibrosis throughout her life and on February 7, 2015, she passed away at age twenty-three after her body rejected the set of lungs she had received by transplantation only a few months prior. Click here to read her inspirational story, as told by her brother, Stephen Shannon.
Do you know any stories like Jeniffer and Stephen’s?

5 Lung Diseases That Affect the Airways

Mar 29, 2019 01:40 am | Cystic Fibrosis News Moderator

Replies: 0
There is a broad spectrum of lung diseases, which includes any disease that causes the lungs to not function as they should. They affect different parts of the respiratory system, including the airways, lung tissue and blood circulation. Click here to learn more about a few examples of lung diseases that affect millions of people worldwide.
Did you know about these diseases? Did any of it surprise you?