Cystic Fibrosis News Today Weekly Forum Digest

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Gene Therapy Takes Center Stage at 2019 NORD Summit

Dec 19, 2019 04:38 am | Cystic Fibrosis News Moderator

Replies: 0

Gene therapy was the topic of conversation at this year’s NORD Rare Diseases & Orphan Products summit held in Washington, D.C. Find out more about the discussion here.
What do you think about gene therapy? Are you interested in learning more about it?

Volunteering in school: parents with CF

Dec 19, 2019 02:41 am | Jenny Livingston

Replies: 0
Every year, without fail, my daughter brings a note home from school that says something to the effect of “we need classroom volunteers… desperately.” I always envisioned volunteering in her classroom, and I actually attempted to do so one year. But it didn’t last long. Maybe it was simply being around so many children at once, or maybe it was the kid who sneezed directly on my hand as we were reviewing times tables… one way or another, I ended up sick.
I no longer respond to the letters that call for volunteers. It’s just not something I’m willing to risk anymore. But I feel badly about not being involved with my daughter’s classroom.
Do you volunteer or participate in classroom activities? Have you found other ways to be involved that don’t require face-to-face contact?

Self-esteem

Dec 19, 2019 02:40 am | Tré LaRosa

Replies: 1

One of the hardest things I struggle with on a daily basis is self-esteem. I actually don’t know if this is directly due to my having CF or if it’s any number of other things. I think the simplest answer is that it’s a combination of all the above. I wish I had a better answer for how I get through this, but I really don’t.
1. Do you struggle with self-esteem? Do you understand why? What types of things do you struggle with?
2. Do you have strategies for working through it? What are they?
3. Any other thoughts?

Kalydeco Improves Lung Function in CF With Non-Responsive Mutation, Case Study Reports

Dec 18, 2019 03:36 am | Cystic Fibrosis News Moderator

Replies: 0

Treatment with Kalydeco alone improved lung function and quality of life in a CF patient with responsive and non-responsive mutations, a case study shows. Learn more about this treatment here.
Have you ever been treated with Kalydeco? How did it affect you?

Real Talk Tuesday: CFTR Modulators and Reproductive Health (personal experience)

Dec 17, 2019 01:43 pm | 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 difficult to talk about. Join the conversation on Instagram or here in the forum.

𝐑𝐄𝐀𝐋 𝐓𝐀𝐋𝐊 𝐓𝐔𝐄𝐒𝐃𝐀𝐘: 𝐂𝐅𝐓𝐑 𝐌𝐎𝐃𝐔𝐋𝐀𝐓𝐎𝐑𝐒 𝐀𝐍𝐃 𝐑𝐄𝐏𝐑𝐎𝐃𝐔𝐂𝐓𝐈𝐕𝐄 𝐇𝐄𝐀𝐋𝐓𝐇⁣
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Fair warning: if you’re uncomfortable with words like “cervical mucus” or talk of menstruation, you should probably just keep scrolling. ⁣
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But if you’re a woman with CF who is currently on a modulator, switching modulator drugs, or about to start taking one for the first time, I hope you’ll hang out and chat about this.⁣
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One of the first things I noticed when I started taking Trikafta was not a change in my breathing, cough, or amount of sputum I was producing — it was a significant change in my 𝐜𝐞𝐫𝐯𝐢𝐜𝐚𝐥 mucus.⁣
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I didn’t really mention it to anyone, and kind of wondered if it was just something weird my body was doing. But then I started seeing other women post about in private groups and I realized this is a thing!⁣
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We talk about the purge of mucus from our lungs and even our bowels, but nobody is openly talking about the vaginal purge! (#sorrynotsorry for that phrasing)⁣
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Thick cervical mucus and irregular ovulation/menstruation are common barriers to pregnancy for women with CF. But these drugs are changing the game! My periods regulated on Orkambi, and my cervical mucus has significantly thinned on Trikafta.⁣
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For some, pregnancy would be a miracle. But for others… not so much. An unplanned pregnancy can significantly affect a woman’s life and health. So we need to be careful! ⁣
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I hope that our doctors and CF teams are talking openly about reproductive health, especially in relation to modulators. If they haven’t had this talk, I encourage YOU to initiate the conversation.⁣
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As our bodies are changing, we may need to reevaluate our treatment and care plans. Some forms of contraceptive may be affected by these drugs (for instance, we know that Orkambi can make hormonal BC less effective) so it’s important to research and decide which one is best for you.⁣
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Women with CF, have you noticed reproductive health changes while on modulators? If you’re on Trikafta, what has your experience with this been?⁣