Cystic Fibrosis Blogs
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A worldwide Cystic Fibrosis community combining cultures, nationalities and age groups. The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.
Cystic Fibrosis Blogs
6M ago
We want to introduce you to an exciting new project we have launched at CysticFibrosis.com.
After years of effort, we are proud to announce that we have partnered with technology platform Vaultt to help us share our much-needed personal health information with researchers and Pharma, helping them better understand Cystic Fibrosis, with the goal to improve treatment and outcomes.
You will be provided with a complimentary subscription to the Vaultt platform which allows you to manage you or your loved one’s care journey with rich features such as My Health Summary, tasking, event ..read more
Cystic Fibrosis Blogs
1y ago
Life-Changing News
Hello there! I’m Zain Arif, a 19-year-old who’s been living with Cystic Fibrosis (CF) since I was just a baby. Being diagnosed with CF wasn’t easy, especially in a country where the disease wasn’t commonly known. But thanks to a determined doctor who recognized the symptoms, I was able to start receiving the proper treatment for my condition.
Moving Abroad, Facing Obstacles
Growing up, I was constantly on the move due to my father’s job. While traveling to different countries as a child was exciting, it also came with its own set of challenges. As a fussy eater and someone ..read more
Cystic Fibrosis Blogs
1y ago
Deciding to Get Pregnant
The choice to have children is filled with uncertainty. What if my baby is born with higher needs than usual? What if I lose my income? How can I promise to provide for this child until adulthood when the future is so uncertain? Cystic fibrosis adds to that uncertainty. What if I am too sick to care for my kids? What if I die before they are grown? What if they resent having a sick mom?
There were many good reasons for me and my husband to choose not to have kids, and yet we chose to become pregnant and we did it twice. For me, not taking the chance to raise a family ..read more
Cystic Fibrosis Blogs
1y ago
*Note from the editor: Meet Kevin, a 65-year old “Grampy” with Cystic Fibrosis! My first thought was: I bet he has some interesting stories to tell! Well, for his article Kevin submitted a delightful collection of interactions and hilarious anecdotes from his life. Hope you enjoy reading them as much as I did!*
#1 You have Cystic Fibrosis? Oh good!
After offering my business card to a nervous new cf mom: “I have CF, so if you have questions…”
I have often gotten the relieved response, “You have CF? Oh good!”
Nowadays, with the understanding of infection control, I meet new CF protective ..read more
Cystic Fibrosis Blogs
1y ago
As a young child, I dreamed of one day having a little girl to call my own. I practiced swaddling and rocking my favorite stuffed animals all the while carrying her name tucked away in a secret place in my heart. Many years later, even as I found myself deep in the desperation and sorrow of infertility, I never grasped the magnitude of how becoming a mother would change my life. It was only until I felt her warmth against my chest and danced her to sleep in the dark that I finally began to understand how motherhood was going to break my heart open and put it back together in the most beautiful ..read more
Cystic Fibrosis Blogs
1y ago
“If you have the aspiration of kicking ass when you’re 85, you can’t afford to be average when you’re 50.”
-Peter Attia
As CFers are living longer, fuller lives this sentiment from Peter Attia rings true. Many CFers are capable of living to “old age” but it doesn’t just come naturally. We have to put in hard work for our health, but the hard work is worth it and will pay off in the long run. We could potentially delay the onset of worsening disease by being wholly conscious of our health choices, including diet and exercise.
Exercise and an FEV1 of 105%
Exercise is a key component to health ..read more
Cystic Fibrosis Blogs
1y ago
Emotional regulation is defined as being able to “control” our emotions so that they stay within a manageable range of intensity for us. But what does it mean if we don’t feel in control and our emotions seem to feel too much? When living with CF it is pretty common that we sometimes feel overwhelmed and like our emotions and feelings are just too big. The irony is that to manage CF we need to be emotionally regulated and feel resilient for better health outcomes and a greater quality of life.
Chronic Illness & Survival Instinct
Chronic health issues interrupts our access to the human hier ..read more
Cystic Fibrosis Blogs
1y ago
Activists are pressing governments in low- and middle-income countries to open up access to generic, more affordable versions of Trikafta/Kaftrio. Vertex Pharmaceutical’s drug is recognized as a major breakthrough in treating cystic fibrosis, but due to patent monopoly and high costs, the treatment is still inaccessible to an estimated 88% of CF patients globally.
Introduction
Vertex faces continued criticism over the high pricing of its cystic fibrosis (CF) treatment Trikafta/Kaftrio which allows only a small percentage of global patients access to the drug. A recent report suggested that jus ..read more
Cystic Fibrosis Blogs
2y ago
– By Aoife Rafter
I was doing so well, isolating and laying low the past 2 years when COVID cases spiked in my local area. I was the only one out of my family and friend who hadn’t contracted the virus, despite being a close contact 3 times!
But then it got me, just last month as I attended my friend’s wedding in Spain, I landed home jet-lagged, exhausted, hungover, and COVID-ridden!
Luckily I had survived the worst of it before I came up positive on a test, and didn’t need any medical interventions from my Cystic Fibrosis team.
However, it’s been 5 weeks now and I’m still not quite back to my ..read more
Cystic Fibrosis Blogs
2y ago
– By Tina Clarke
Most people with CF who have received a double lung transplant know the date nearly as well as they know their birthday and they celebrate it with cake, balloons or gathering with loved ones. My strange truth is that I don’t even remember the date of my transplant and barely the year and therefore I don’t celebrate on the particular day that I had my life saved (for at least a number of extra years).
A Phase
Before transplant I felt very scared and vulnerable and I was deeply struggling with every movement and activity, and just breathing was exhausting. There was also a lot ..read more