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?

Comparison Corner: How Do You Handle Complainers?

Feb 12, 2020 04:47 am | Bailey Vincent

Replies: 1
My column this week is up and it’s basically about the art of not comparing yourself to others whenever possible… and how hard that can be when someone is complaining about their health all the time.
Question: How do you handle health-talk with those who might not understand?
I’d love some examples! Personally, I actually LOVE when my friends trust me enough to let me in and let me take care of them… it’s such a relief and a positive place to put our energy. I never mind when others open up to me, and I love trying to be a good support.
But as a dancer, I do grit my teeth a lot with those who are chronic-complainers without much rhyme or reason or rational. They exist. I love them. I try to bite my tongue. But man do they exist.

Real Talk Tuesday: Hair Loss

Feb 11, 2020 09:06 am | Jenny Livingston

Replies: 0
On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes embarassing or difficult to talk about. Join the conversation on Instagram or here in the forum.

In 2016, several weeks after a hospitalization, I began losing my hair. I’ve always been a shedder, but this was unlike anything I had ever experienced! I’d lose handfuls of hair at a time, especially while showering. I remember looking at a sink full of hair one day and crying because I was certain I was going bald.
After a series of tests and doctors visits, I was eventually diagnosed with telogen effluvium – a temporary hair loss condition. Telogen effluvium can be caused by any major stress to the body – surgery, severe sickness, extreme weight loss, and even psychological trauma.
Other common causes of hair loss include: hormone changes, thyroid issues, vitamin deficiencies, environmental factors and medications. One study found that 50% of women with CF who reported hair loss were on Orkambi and 20% were on Symdeko.
In short, there are a ton of potential causes of hair loss and therefore, many possible solutions! And sometimes, the only solution is to wait it out. Ugh.
Since my experience in 2016, I’ve experienced significant hair loss after every surgery and/or hospitalization. I was admitted for a CF exacerbation in November and, right on schedule, I’m currently in a hair loss phase (telogen effluvium usually happens 2-3 months after the triggering event).
In the past, I’ve used hair re-growth shampoos, supplements, and hair fill-in powders to help conceal especially thin spots. But I don’t really do anything now. I know that for me, this is temporary. I won’t go bald and my hair will grow back eventually! It’s not a fun thing, but I’ve (mostly) come to terms with it.
Have you experienced hair loss? Were you able to determine the cause? Do you have any tips for someone currently experiencing hair loss?