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? |
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CF Clothing Line: What Would You Design?
Sep 10, 2020 07:51 am | Bailey Vincent
Replies: 0
Here’s a silly question: If you could invent one piece of clothing to benefit you while in the hospital (or as a CF patient), what would it be?
I’m always day dreaming about this. It’s a dream of mine to create a sick/tube/patient friendly clothing line that can literally go from bed… to day… to dance (movement friendly)… and back again. I know exactly what it would like, what would make it different from similar concepts, and why it’s needed. I guess, in a way, it would make an ideal pandemic clothing line, too?
I do NOT dress fashionably when hospitalized, but I DO change out of a hospital gown as quickly as possible for psychological reasons (always makes me feel better).
What about you? |
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Hospitals and Timing
Sep 09, 2020 01:19 pm | Bailey Vincent
Replies: 0
I shared a bit about preparing for surgery in a post yesterday, but started thinking about the “timing” of medical procedures, and what a delicate balance it can be.
I’ve had surgeries where no one could be there overnight. I’ve had times where I worried about getting a ride to or from. And I’ve had other times when it happened during a holiday break or a low-work load month, and I had many loved ones to lean on.
Currently, I have a lot of stress with timing. My husband is looking for a job (interviewing everywhere he can)- as his teaching contract was not renewed post pandemic- and it’s scary all around. We have faced worse… but man, wouldn’t it be nice if we got paid surgical leave? (lol)
It sounds spoiled, but I wish I could stock up on things (groceries, a working vacuum, a fuzzy new blanket) before going in, but we just can’t. I’m so lucky that one of us has always had a job, or has always hustled really hard to keep/find one… So we have never apathetic. Still, there is much we cannot control when it comes to timing!
Have you ever been in the hospital during a difficult time in your life? |
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How involved are you in the CF community?
Sep 09, 2020 07:00 am | Jenny Livingston
Replies: 0
I’ve recently begun speaking with a young woman who, until our conversations started, had never spoken to another person with CF. She is not the first person I’ve met for whom this is the case, nor will she be the last, I’m sure.
Growing up with two sisters with CF, plus having opportunities to attend events like CF camp (which I recently posted about) means that I’ve never experienced a time when my life didn’t include others with CF.
I can’t imagine being the only person I’d heard of or known with this diagnosis!
Even though I’ve always known people with CF, I didn’t get deeply involved or find a true sense of community until 2009. That’s when, at the suggestion of a friend/healthcare provider, I started blogging. Immediately, I was able to connect with friends all over the world (literally!) who understood many of the things I was going through.
Since then, I’ve continued to write, connect with others, and share parts of my life on social media. I belong to several CF related Facebook groups. I’ve attended and helped plan virtual events. I’ve actively participated in fundraising for CF (Great Strides, among other things). Some of my dearest friends in life are people who I’m unlikely to ever meet face-to-face. They are internet friends who became like family to me.
On the spectrum of not knowing another soul with CF to being deeply engaged with the community, where do you fall? How involved are you with the online community or CF fundraising efforts? Is it important to you to connect with others in the community, or do you prefer to be less involved?
Clearly, if you’re reading this, you’re involved with the online CF community to some extent (being that this is a CF forum) But I’d love to know how much you’re involved in other ways. |
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CF Camp Memories
Sep 09, 2020 06:30 am | Jenny Livingston
Replies: 1
Some of my favorite memories from childhood include my time spent at CF Camp. Before the dangers of cross infection were known, children with CF and their siblings were sent to sleep away camps in the summer. Growing up, I thought this was something specific to the area we lived (San Diego) but as I got older, I learned that these camps were pretty widespread.
The camp my siblings and I attended was called Camp Pillfeather. We’d stay in cabins with campers in our age groups — sharing bunk beds, getting manual CPT, and nebulizing our meds in the same room. Some of our counselors had CF as well; some were family members of a person with CF. Before each meal, the “pill bell” rang loudly, summoning campers to the cafeteria where we’d line up to get our pills, handed out by nurses and other healthcare providers. There were crafts, fishing trips, swimming pools, camp songs, costume contests, dances, and early morning camp-wide games of Simon Says.
It was truly one of the coolest and most fun experiences! Our camp was shut down in 1994 when the risks of people with CF spending time together were becoming more well-known. I’ve heard that some of these camps continued into the 2000’s! While I’m glad that we now understand cross infection and take measures to prevent it, I will forever be glad to have grown up in a time when things like CF Camp existed!
Did you ever attend a CF camp? If so, what are some of your favorite camp memories? If you’re a CF parent or person with CF born after the early 2000’s, the idea of having dozens of people with CF gathered together probably seems so foreign and perhaps even scary. What are you thoughts about CF camps?
I was able to find this video yearbook on YouTube (which includes footage of both my sisters!) from Camp Pillfeather in 1989. |
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Does Gender Hurt Our Health?
Sep 08, 2020 02:35 pm | Bailey Vincent
Replies: 3
The week is almost done, and my thoughts on loss and celebrity sickness are almost done too. I talked a bit about the loss of The Black Panther himself to colon cancer this week, and how that impacted a lot of us socially. But one thing I kept thinking to myself was: “He was diagnosed at 39”.
My partner is almost 39, and I can guarantee you he has never had a colonoscopy. Although colon cancer survival rates are tragically far worse for POC than white counterparts (as this article on Self magazine explains), another factor we don’t discuss as readily is gender.
Talking about gender disparity in the global wellness scene is not always an easy subject and can make many of us (me) feel uncomfortable. We have heard about how hard it is for women to be “heard” by physicians sometimes (averaging a couple of years delay in diagnosistic process for major ailments compared to men, as this article expands upon), but we don’t talk about how difficult it can be for men to open up about their disease process in society today.
Do you think it’s harder for men to be open about their health or potentially feeling “weak”?
Specific to CF… Have you noticed any disparities in how male and female CF patients are treated or supported?
There is no wrong or right answer to this of course, because I truly don’t know what the average reply will be, and want to learn your personal feelings on the subject. If I had to guess, I would imagine that CF women feel their symptoms are disregarded or ignored more readily than male counterparts (just based off… well, history), but that male CF patients feel they have less emotional support or that they have to “hide” what’s hurting them more often. Which, in turn, likely causes more hurt to their overall being than we’ve taken the time to track and treat.
Again, truly just hypothesizing. What do YOU think? How does gender impact care? |
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