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?

Just found out that our baby has CF

Jul 07, 2020 05:27 am | Ashley

Replies: 8
Hello,
My husband and I just found out about a week ago, through CVS, that our baby (still pregnant) will be born with CF. We are both carriers of the Delta F508 mutation.
We are new to this community, and are looking for any advice and information.
Thank you.

NuvoAir Home Monitoring System Bolsters Telemed Use in CF, Survey Finds

Jul 07, 2020 04:36 am | Cystic Fibrosis News Moderator

Replies: 0

A survey found cystic fibrosis patients using NuvoAir’s home monitoring system made better use of telemedicine and needed fewer in-person doctor visits. Click here to read more.
What do you think of this news?

How have you stayed busy during quarantine?

Jul 06, 2020 11:37 am | Jenny Livingston

Replies: 0

It goes without saying that many of our lives have drastically changed since this pandemic began. I don’t want to dismiss the very real struggles many people are facing during this time, but at this particular moment I want to focus on something a bit less heavy.
Since spending so much more time at home, I’ve had some extra time to rediscover some of my talents and hobbies. I began painting again, learned how to make jewelry, returned to journaling and meditation, and more. About a month into our quarantine experience, we did something impulsive and maybe a little reckless… WE GOT A PUPPY! In the months since then, several other families I know got a puppy as well. It makes total sense to me! What better time to potty train a puppy than when you’re stuck at home anyway? Those puppy snuggles are also a great way to relieve stress (in my opinion anyway).
I’m curious, how have you stayed busy during quarantine?
Have you learned a new skill? Did you join the Pandemic Puppy crew? Did you rediscover an old hobby or dust off some forgotten talents? I’d love to hear how you’ve been spending your time recently.

We Are Back! Who Am I?

Jul 06, 2020 06:17 am | Bailey Vincent

Replies: 0
Hey everyone! My co-moderator Jenny Livingston re-introduced herself this week on the forums (her post is titled “Hello Again”), and now it’s my turn! Both Jenny and I have loved trying to grow and nurture the CF forums here, but took a pause during the pandemic. Now… We are back! We have a lot of ideas and questions for you yet to come, but for now: Who am I?
I am a 33-year-old mother of two girls (14 and 11) who lives on a rural lake in Virginia, just outside the city of Richmond. I own a body positive professional dance company- which houses an inclusive dance company for those with chronic illness within it- although everything is currently on hold and I’m slowly losing my mind. I also work as a professional dancer, ASL performer, teacher and choreographer, as needed. Whilst waiting for the world to spin again, I am continuing to work as a writer, self publish some books on the side, and homeschool my girls which (surprisingly) I was actually doing before all of this!
I am the baby of 5 (just like Jenny), but the only one with CF (mine is a derivative; impacts my GI more than my lungs, most of the time). Hearing loss and heart disease does run in my family, however, and I have both of those as well. I am fluent in sign language and actually met my (hearing) partner at a deaf and blind school where we both briefly worked. After some time debating on if I even needed/benefited from a Cf clinic, I found one that I adore and truly connect with… and my health has never been better! (That’s not actually true. My biliary system and arthritis has never been worse, but the sentence sounded more optimistic the first way.)
I look forward to meeting all of you and getting to know you more!

Hello again!

Jul 06, 2020 06:06 am | Jenny Livingston

Replies: 1

I’m Jenny, one of the moderators of this forum. My co-moderator (the lovely @bailey-vincent) and I have been on hiatus for a few months, but I am happy to report that we are back! She will also be posting to reintroduce herself soon, so especially if you haven’t met her yet, be sure to watch for her post.

A little more about myself: I am 32 years old with cystic fibrosis. I have a 10 year old daughter who is the light and love of my life. I also have a partner, Randy, who is more than I could have ever hoped for. Together, we live in a pretty rural area in Utah (United States).

I am the youngest of 5 children, and the third in my family to be born with CF. Growing up in a house with 3 CF kiddos must have been pretty chaotic, but it’s all we knew. In many ways, I feel blessed to have never been alone on this journey. First, I had my sisters and then, the online CF community. I love connecting with others, sharing our stories, learning from one another, and supporting each other.

You’ll see me around here often. Please don’t hesitate to reach out, whether you have questions or you’d just like to say hello. I look forward to chatting more and getting to know each of you!