Symdeko & Experiences
Mar 25, 2019 10:00 pm | Tré LaRosa
Replies: 2
Symdeko is safer than Orkambi and has less adverse effects, but other than that, it didn’t have much better therapeutic effects. On this topic, I want to discuss experiences on Symdeko.
1. Are you on Symdeko? How long?
2. Were you on Symdeko then came off? When was that?
3. What is your overall experience on it?
4. What is your hope with next-gen modulators? |
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Environmental triggers
Mar 25, 2019 04:33 pm | Tré LaRosa
Replies: 0
I don’t have bad allergies but I definitely notice that different weather affects me differently. Do you notice different triggers for different aspects of your CF health? What is your favorite type of weather? |
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How do we want people to interact with us?
Mar 25, 2019 04:30 pm | Tré LaRosa
Replies: 0
A common refrain in the CF community is that our lives just have a different “normal” or that “normal” doesn’t exist at all. I think this is mostly true. But this also means we have to lead the charge in how we want people to interact with us. There are debates like “CFer” vs “person with CF,” or if we need to be open about it. I hope this topic can be an opportunity for us to discuss these types of debate, welcome other viewpoints, and collate it all together.
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Check Out These Books About Cystic Fibrosis
Mar 25, 2019 02:29 am | Cystic Fibrosis News Moderator
Replies: 0
Books that deal with a disease that’s affecting you or your loved ones can be sometimes hard to read, but they can also remind you that you’re not alone.
Other people’s stories, even if they’re fictional, are a reminder that other people are going through the same struggles as you are and can give you hope. Click here to check out a list of books that represent different people’s experiences of living with CF.
Have you read any of these books? Are you planning to? What other books about cystic fibrosis/chronic illness have you enjoyed? |
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Here Are Some Things Your Partner With CF Wants You to Know
Mar 25, 2019 02:20 am | Cystic Fibrosis News Moderator
Replies: 0
Being in a committed, loving, long-term relationship is a distinctly intimate experience. It’s a special thing to get to know and understand another person, and to have them get to know you in return. Chronic illness makes dating a thoroughly more vulnerable experience, and not just for the patient.
An illness like cystic fibrosis affects everyone the person who has it is in relationship with, including their significant other. Looking back on past relationships, Hannah Buck says there are things about her life with CF she wishes she hadn’t kept a secret from her partner. Click here to find out what they are.
How do you feel about this list? Have you talked to a significant other about any of these things, or do you prefer to keep them to yourself? When do you feel comfortable talking to a partner about your CF? |
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Body Image and CF
Mar 24, 2019 05:30 pm | Luisa Palazola
Replies: 0
CF isn’t a one size fits all disease, and I’m just realizing the irony of that statement while I talk about this topic. I think most people are expected to be enzyme dependent and have difficulty gaining and keeping weight on, which a lot of people CF deal with. I’m not quite that way. I don’t need enzymes to gain weight or absorb my nutrients. And, honestly I think that’s been my biggest blessing.
Granted, I gain weight. Sometimes, especially if I’m sick and sedentary, I gain a lot of weight. And, it’s a weird space to be in, because it’s one of the best things for me having CF as higher BMIs are correlated with better lung outcomes.
However, I can’t dismiss the pervasiveness of looks and body image in the society we live in. One that, while does embrace big booties and thicc curves, also is pivoted on an impossible expectation of perfection. And, it’s that impossible expectation that sometimes and has nudged me into weird and restrictive eating habits. Neurotic and self shaming tendencies. And disappointment in not doing CF right.
How does CF affect your body image? |
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MCM: Vasileios
Mar 24, 2019 05:11 pm | Luisa Palazola
Replies: 0
We’re stoked for this week’s MCM, Vasileios. @ is 27 years old and is from Greece. These are three things important to HIS story with CF:
My parents had to listen to doctors saying I wouldn’t make it past 16 when I was 6 months old, as they had just diagnosed me with CF. When I was young, I thought everyone had to take the same antibiotics and spend the same time as me doings CPT and going to the hospital. I understood the difference when I got to high school. Having a life expectancy so close to your age throws you completely off the rails, how can anyone work towards a future when they don’t have a future? By 21 years old I had already surpassed the number I had been originally given. I moved away from Greece in search of a better medical team, environment, and a university course to keep me distracted.
I landed in Manchester, UK. With a better understanding of the disease and advanced medical research, I was told that my life expectancy was late 20s. In my mind I had a question: what if I live beyond that again? After a lot of emotional rollercoasters, I had to make a plan in case the unlikable future comes. Hence, I started working with @BenMudge_. With a plan and consistency, a future is viable and definitely worth fighting for. But, nothing in life comes easy! Everyone has their own battles, which are not comparable to each other. And, symbiosis with CF is tough, you have to be on alert constantly, you can’t take a rest day, and you can never say you have done enough. According to the numbers we get a shorter life span; nonetheless, life is not the number of years one lives, it’s about experiences. Living a full, happy, and intense life is far more important than just living.
At the time I write this, I am 27 and because of the clogged areas in my lungs, my estimated lung function is 65%. However, that just fuels me to work harder, travel more, and live fuller every day. Something I want to change is to allow myself to laugh more. I used to restrict myself from laughing because it causes a severe and unpleasant cough, however, not laughing means giving something up to CF and life is too short to give up.
What are your plans for the future? |
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Recovery from an exacerbation
Mar 22, 2019 05:38 pm | Tré LaRosa
Replies: 0
How do you go about “recovering” from an exacerbation? What are some strategies you use to get re-oriented and focused on the future? |
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Australia Approves Symdeko for Patients 12 and Older with Cystic Fibrosis
Mar 22, 2019 12:45 am | Cystic Fibrosis News Moderator
Replies: 0
Cystic fibrosis patients in Australia 12 or older who have two copies of the F508del mutation in the CFTR gene can now be treated with Symdeko. Click here to read the full story.
What are your thoughts on this news? |
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