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CF: Birth Weight, Weight Gain in 1st Year Predict Growth Rate, Study Says

Dec 05, 2019 02:26 am | Cystic Fibrosis News Moderator

Replies: 0
A study suggests that low birth weight and poor weight gain in the first year of life predict poor growth in infants with cystic fibrosis. Read more about it.
What are your thoughts about this study and its findings?

CFTR Modulators and Reproductive Health

Dec 04, 2019 03:15 pm | Jenny Livingston

Replies: 2
Once thought of as an anomaly, it is becoming more and more common for women with CF to have children. The number of women with CF who became pregnant more than doubled between 1992 and 2002 (according to the CF Foundation Patient Registry). As targeted therapies for cystic fibrosis get better and better, and life expectancy/quality of life for people with CF continue to improve, it makes sense that those numbers will continue to go up.
Changes in reproductive health after starting modulators is something to be aware of, especially for those women who do not want children or aren’t in good enough health to carry a baby. Women on modulators have reported changes in their menstrual cycle, spontaneous pregnancies (even for those who previously required IVF), and thinner cervical mucus. In addition, CFTR modulators can make hormonal birth control less effective. All of these things should be considered when starting or changing a modulator.
Women on a CFTR modulator, have you noticed changes in your reproductive health? Has your healthcare team made a point of discussing reproductive health when starting or changing modulators?

“Can Sick People Be Sexy?”- Body Image Question

Dec 04, 2019 06:46 am | Bailey Vincent

Replies: 0
QUESTION: Can sick people be sexy?
I wrote a column that had to do with finding sick people sexy and I’d love to know your thoughts. Yes, we feel like some sick people are sexy “even though they’re sick”… Right? We’ve seen this with femme archetypes on sick romantic movies- Stella in Five Feet Apart… Hazel Grace in The Fault in our Stars… and onward- but it’s always “even though”.
Even though we are sick, sure, we can be attractive. If we look away from the scars, maybe.
Personally, I often feel like media makes us feel like we should get an award for still finding them cute. Or for the other lead staying… “even though” they’re sick.
How has this impacted your self image over the years?

Here Is Why I’m A Little Scared To Introduce Myself…

Dec 04, 2019 04:35 am | Bailey Vincent

Replies: 1
I want to introduce myself as a new Moderator here on CF News Today… But where do I even begin?
I’m a columnist and a former journalist (you can see my columns here). I try to be an advocate for “Life in the grey” (living with CFTRD … Yes, I’m part of that rogue 10%!) I am a professional dancer and Artistic Director of a body-positive dance company (http://www.companythreesixty.org).
But here’s my confession: I’m a little nervous about this new job! I’m nervous because this community can be both beautiful and intimidating. Inclusive yet competitive. Connected yet isolating.
So, here’s my thought, in order to get to know one another better and disprove some of my own misbegotten fears: How about we each share one of the most beautiful or surprising stories that has come out of being connected to this community?
Here’s mine: One of my close friends April passed this year leaving two daughters and a lot of heartbroken friends behind. She was a generous, giving, once-in-a-lifetime sort of soul, though we never truly “met”. At her funeral, her husband actually included my fallible words about her on the ceremony program (which now hangs forever in my home). For all the dreams I had as a writer growing up, and all the jobs (like this one) I had hoped to have… I never imagined that the greatest honor of my lifetime will forever be that. No award, or book, or position will compare. Having my words mean anything- anything at all- in the passage of her life, and the purpose of her family, means more than anything else ever will.

CF: Orkambi Reimbursement Approved in France for Patients 2 or Older

Dec 04, 2019 02:22 am | Cystic Fibrosis News Moderator

Replies: 0
French authorities have approved national reimbursement of Orkambi for cystic fibrosis patients 2 or older, with two copies of the F508del mutation. Click here to read more about it.
What do you think of this news?