My Journey with Cystic Fibrosis: Overcoming Obstacles and Embracing Self-Care – by Zain Arif
Cystic Fibrosis community
by Editor
11M 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
Visit website
Parenting with Cystic Fibrosis – by Megan Mancuso
Cystic Fibrosis community
by Editor
11M 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
Visit website
Life is Good! – by Kevin Munroe, 65 years young
Cystic Fibrosis community
by Editor
11M 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
Visit website
Leaving a Legacy That Lasts – by Jessica McDearman
Cystic Fibrosis community
by Editor
11M 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
Visit website
Living For Longevity – by Ashley Wilson
Cystic Fibrosis community
by Editor
11M 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
Visit website
Emotional Regulation & Resilience Living with CF – By Tina Clarke
Cystic Fibrosis community
by Editor
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
Visit website
Patients and advocacy groups take legal action against Trikafta patents in four countries
Cystic Fibrosis community
by Editor
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
Visit website
Long COVID Breathlessness
Cystic Fibrosis community
by Editor
1y 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
Visit website
Why I Don’t Remember or Celebrate the Date of my Double Lung Transplant
Cystic Fibrosis community
by Editor
1y 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
Visit website
Why your ADHD Symptoms Might Actually be Trauma
Cystic Fibrosis community
by Editor
1y ago
– By Tina Clarke Results from studies like the TIDES study indicate that the prevalence of ADHD symptoms in children and adults with CF are significantly higher than the rest of the population, as are anxiety and depression. Researchers find some connections between anxiety and depression and whether the patient caregivers have these diagnoses as well, but what about the reasons for ADHD? Researchers don’t have answers yet for the curious relationship between CF and ADHD symptoms, but there appears to be a gap in exploration of possibilities that can also apply to the higher incidence of anxi ..read more
Visit website

Follow Cystic Fibrosis community on FeedSpot

Continue with Google
Continue with Apple
OR