Beyond Awareness: What 4 Tweets Taught Us About Cystic Fibrosis

Jun 8, 2018 | Patient Blog

Each year, the month of May is designated for Cystic Fibrosis Awareness. Throughout the month, a wealth of information is shared about Cystic Fibrosis that can provide various entry points into the discussion. But, tucked between the powerful memes, infographics, and videos aimed to educate people on CF, the real story is found.

Here, we can go beyond awareness to the actual reality of what life with Cystic Fibrosis truly looks like for the more than 70,000 people living with CF worldwide. For some, we find hospital visits and daily treatments, while for others we see no mountain top too high that it cannot be scaled.

For the sake of information, and before we get to the real story of those living with CF every single day, what is Cystic Fibrosis?

What Is Cystic Fibrosis?

According to the Cystic Fibrosis Foundation, Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.

Is Cystic Fibrosis A Genetic Disease?

Cystic Fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene — one copy from each parent. This autosomal recessive genetic inheritance pattern means a child can only develop the disorder if they inherit the gene from both parents, being as they are carriers of the gene.

The Cystic Fibrosis Foundation reports the inheritance pattern for children (of parents both carrying the gene) as:

  • 25% chance of having Cystic Fibrosis
  • 50% chance of not having the disease, but being a carrier
  • 25% chance of not having the disease and not being a carrier

1 in 31 people in the United States are carriers for the gene. Many don’t even know it.

How Many People Are Living With Cystic Fibrosis?

More than 70,000 people worldwide are living with Cystic Fibrosis and approximately 1,000 new cases of Cystic Fibrosis are diagnosed each year. Of those diagnosed with CF, more than half is 18 or older, with more than 75 percent diagnosed by age 2. Since 2010, it’s now mandatory for all doctors in the United States to screen newborns for Cystic Fibrosis.

You can learn more about Cystic Fibrosis by visiting the Cystic Fibrosis Foundation website here.

Common Misconceptions About Cystic Fibrosis

Here a few of the most common misconceptions non-patients have about Cystic Fibrosis:

  • Cystic Fibrosis can be contagious

Many people fear they will catch Cystic Fibrosis if they are in contact with a patient. Being that Cystic Fibrosis is a genetic disease that’s inherited from both parents, it’s impossible for CF patients to transmit this disease to others.

  • Patients with Cystic Fibrosis can’t live into adulthood

According to the National Institutes of Health, the current average life expectancy for CF patients in the United States who live past childhood is about 37 years. But there are also exceptional cases. Depending on the severity of their disease and how well they are managing their condition, some patients have lived into their 70s.

  • The future isn’t bright for patients living with Cystic Fibrosis and their families

Children who are born today with Cystic Fibrosis have a completely different prognosis from those born more than 30 years ago.

And researchers are working hard to find even further developments in Cystic Fibrosis treatment.

Beyond Awareness: What 4 Tweets Taught Us About Cystic Fibrosis

For those living with Cystic Fibrosis, every day of their lives is awareness month. From daily therapy which can include, for starters, airway clearance, oral and inhaled antibiotics, pancreatic enzyme supplements, insulin, drugs to reduce stomach acidity, bronchodilators, corticosteroids, vitamins, CFTR- modulators, oral and IV nutritional supplementation, we can learn a lot about life with CF by scrolling through Twitter and reading through the many tweets shared by some pretty incredible and courageous people who are living with Cystic Fibrosis or a loved one of someone with CF.

In these tweets, we see hope, courage, and strength on display in a way that we can all draw encouragement from, especially for those days where we seemingly have no hope, courage or strength.

 

If you’re not following @ClaireWineland on Twitter, you should. She is a gem and we are excited to have her be a part of our upcoming Evening of Hope. Now officially on the wait list for a lung transplant, Claire is such an inspiration for so many. She is also raw, real, and so much more than her story. You can also watch this video from Claire on what’s been happening in her life, as of late, that will take us all from beyond awareness, to life expectancy, here.

 

No words. The fight is real for @jimboCFwarrior, FULL TIME FIGHTER OF CYSTIC FIBROSIS…

 

The bio for @CF_vs_Everest says it all, “Cystic Fibrosis man attempting 7 Summits seeks business/individual help to raise money for charities to fund CF cure research. Everest/Carstenz/Elbrus/Kili done”

 

Meey @NicRobins28, CF mama of two

 

No Mountain Too High

If you want to learn more about Cystic Fibrosis and go beyond statistics and into the reality of what life really looks like for the more than 70,000 people worldwide who have Cystic Fibrosis, you can follow along with many of them on Twitter as they share their story. And for many, CF is just but only part of their story. As you can see, for many with Cystic Fibrosis, there’s no mountain so high, that they won’t climb.

Beyond the numbers, I think there’s something we all can learn about life from each and every person living life with Cystic Fibrosis, and that’s appreciation.

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