Cystic Fibrosis News Today Weekly Forum Digest

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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator

Replies: 0

Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.

What do you think of this news?

“I’m not unreliable, my health is.”

Sep 30, 2020 08:20 am | Jenny Livingston

Replies: 0

Many times throughout my life, my health has gotten in the way of me fulfilling commitments or obligations. CF can stick a wrench in even the best laid plans… and it drives me crazy! A core tenet of my personality is the desire to be reliable and consistent. Learning to accept that my health is prone to change and affect my plans at any moment is a constant struggle. Just today, I had to cancel an appointment because I’m having symptoms that need to be addressed before we can safely resume in-person appointments, and I’m not happy about any of it!

Does the unpredictability of CF ever get to you? Has there been a time when your plans had to change last-minute because of CF? How do you handle the uncertainty of your health?

Godmother of 10months old baby with CF

Sep 29, 2020 10:34 am | JeanDArc

Replies: 4

HI All

I am a Godmother of a 10 months old baby girl with CF living in Slovakia.CF was diagnosed a few weeks after the birth, we have been giving her Dekas Plus vitamins in liquid form, she’s had good results.once she is 2 years old, the doctors will start prescribing Orkambi I think. I recently learnt that there are better CF medicines than Orkambi on the market, e.g. Symdeko. However, Symdeko is not available in Slovakia and Slovakian doctors do not work with it because they are backwards a lot and don’t care much either so I wonder how to get it and how much it costs please. Thanks for any advice.

Allergies?

Sep 29, 2020 09:30 am | Jenny Livingston

Replies: 0

For the last several days, I’ve been dealing with either exacerbated allergy symptoms or a head cold. Honestly, I have a hard time telling the difference sometimes. (Thankfully, the lack of a fever or lung involvement, plus a negative COVID test, mean that I can rule out coronavirus.)

Do you struggle with seasonal allergies? If so, do they flare up more than once a year? How do you tell the difference between allergy symptoms and CF or viral symptoms?