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Regular Exercise by CF Patients May Promote Lung Health by Lowering Adiponectin Levels

Oct 28, 2019 07:27 am | Cystic Fibrosis News Moderator

Replies: 0
Blood levels of an inflammatory hormone called adiponectin are lower in CF patients who exercise for years than in those who are sedentary, research shows. Click here to read more about it.
What do you think of this news?

Anxiety in children of parents with CF

Oct 28, 2019 06:54 am | Jenny Livingston

Replies: 0
We know that people with CF and their caregivers are more likely to experience anxiety and depression than the general population. Research has shown this to be true time and time again. But there’s a bit of a gap in the literature: how does CF affect the children of those living with it?
Generally speaking, it is known that children of chronically ill or disabled parents are more likely to experience anxiety, depression, and behavioral issues. But this isn’t something that’s widely discussed in the CF community (at least not to my knowledge).
It used to be that people with CF didn’t live long or healthy enough lives to raise children, so up to this point, I don’t think there’s been much focus on how CF affects the children of parents living with it. All of that is changing, thanks to medical advances and scientific breakthroughs.
We’re really the first generation of people with CF who are commonly having families and raising children. We’re blazing that trail — which is amazing — but it also means that there’s so much we don’t know yet. There will definitely be challenges along the way.
My daughter struggles with anxiety related to my health and separation from me (which is closely tied to my health, since hospitalizations have been the main reason we’ve had to spend time apart). It’s a really difficult thing to manage, even though I actively try to address her concerns. My own mental health has been so deeply affected by CF, it only makes sense that my daughter would have similar struggles.
Is this something you can relate to? Does your child (or children) struggle with anxiety related to your health? How do you address this issue?

CF Does Define Me in Some Ways…. And That’s Okay

Oct 26, 2019 08:54 am | Jenny Livingston

Replies: 1

“CF doesn’t define me.”
“I won’t let CF hold me back.”
“My disease isn’t who I am.”
I’ve heard and read these statements more times than I could possibly count. In fact, I’ve said these things myself over and over throughout the years. When living with a chronic illness or disability, we like to believe that we have some degree of power over it – that we can still live life on our terms and refuse to succumb to the disease we’re fighting.
Our society perpetuates the myth that allowing our disease to define us is inherently negative. We’re told that accepting limitations is the equivalent of giving up, and that allowing our illness to become part of our identity is a sign of weakness. In recent years, my thought process has changed a bit and I’ve begun actively rejecting these messages from society. I’ve reached a point where I’m at peace with CF being a defining piece of my identity, and I’ll tell you why…”
Read the full post here: http://www.proteostasis.com/for-patients-families/community-column-jenny-livingston/cf-does-define-me-in-some-ways-and-thats-okay/
“I’m a firm believer that our character is never tested in comfortable or easy moments; it’s the most difficult ones that reveal who we truly are. CF has presented some of the most trying, agonizing, defining moments in my life, and as cliché as it may sound, I’m truly grateful for the ways in which those experiences have shaped me. While it’s certainly not the only defining factor in my life, CF is undeniably part of who I am.”
Do you embrace or reject the sentiment that CF can be a defining characteristic? What are your thoughts on this?

When compliance becomes more difficult

Oct 25, 2019 05:34 am | Jenny Livingston

Replies: 0
I’m a very compliant patient. I do all that’s asked of me, I rarely miss treatments, and I generally do it all with a pretty good attitude. However, I find that there are times when compliance becomes more difficult.
If I’m experiencing too much stress in other areas of life, or I’m feeling extra tired, it’s a lot harder for me to be compliant with treatments. I know I’ll feel better if I do them, I know that I need to do them, but sometimes it’s incredibly difficult to talk myself into actually getting them done.
Do you ever experience periods when compliance seems harder than usual? What do you do to get out of that funk?

The other 10%…. FDA approves Trikafta

Oct 24, 2019 03:57 pm | Jenny Livingston

Replies: 6

As I’m sure many of you know, the FDA has approved Trikafta, the long awaited “triple combination” drug from Vertex. This drug will be effective for 90% of the CF population. This is a huge win for the CF community! We have every reason to be thrilled and full of hope!
But as we celebrate together, I think it’s also important to remember the 10% who will not be eligible for this drug due to their specific combination of gene mutations. The battle is not over! We will stick together and continue to fight until everyone has a highly effective therapy option!
Do you or someone you know have a rare or nonsense gene mutation? How do you think we can stay united as a community in order to be sure those in the 10% aren’t left behind?