Cystic Fibrosis News Today Weekly Forum Digest

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

Oct 23, 2019 04:48 am | Jenny Livingston

Replies: 0
“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?

The other 10%…. FDA approves Trikafta

Oct 22, 2019 01:23 pm | Jenny Livingston

Replies: 2

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?