Filtering by Category: Simply CF

Breathe Bravely Backyard Bash

It happens once a year. After a morning of walking to support the Cystic Fibrosis Foundation and their tireless endeavor to finding life-extending therapies and cure for those living with CF, our backyard is transformed into a gathering place for a night of celebrating Breathe Bravely. A night celebrating each of you that has helped give life and breath to this organization and made it sing.

This night was something truly special. The energy in the backyard was contagious to anyone who walked through its gates. It was an atmosphere that enveloped you in pure happiness: live music from beneath the pergola, awesome pizza, amazing friends, and a simple cause that was alive in every person present. From beneath the giant tent and backyard you could hear laughter from all the kids, the crash of giant Jenga blocks, and an abundance of joy. Most of all, there was an unmistakeable hum of excited conversation - dialogue that buzzed around the incredible milestones achieved by Breathe Bravely this past year. 

BRAVE BUNDLES:
In the last year, Breathe Bravely has sent out 20 Brave Bundles to individuals across the United States in need of an extra boost of bravery and support during a difficult time. Find out more about our Brave Bundles and send us a message with the name of someone you know that might be in need of a Bundle: Brave Bundles.

IMPACT:
This year, Breathe Bravely was awarded an incredible opportunity. Our organization was the recipient of the Cystic Fibrosis Foundation Impact Grant - a grant allowing Breathe Bravely to see its dreams of sINgSPIRE take shape and come to life.

sINgSPIRE:
In February of 2017, Breathe Bravely's sINgSPIRE program was underway. The first 5 students had a successful and meaningful 10 weeks with their assigned sINgSPIRE voice instructor - together combatting cystic fibrosis through the art of singing. This week, 5 new sINgSPIRE students will be assigned to one of our brilliant sINgSPIRE instructors and the next session will be underway! We are off to an amazing start with this Breathe Bravely original program and it couldn't have been possible without you and your fervent support! Learn more about our program and submit an application today.

GIVING VOICE
Over the last year, Breathe Bravely has had the amazing opportunity to use its voice - creating meaningful dialogue and building a community among those impacted by cystic fibrosis. Most importantly, we have continued to simply find and share the beauty that lives within every breath we each are given. 

None of this would have been possible or continue to be possible without each of you, your unwavering support, and belief in our mission. Thank you for being right next to us every breath of the way. It's amazing what can happen in a year, and we are just getting started. 

If you'd like to learn more about Breathe Bravely, donate to our mission, or send us a message please explore our website!

 

 - THANK YOU - 

A huge thank you to Jordan & Stacey at Big Top Tent Rentals for their heartfelt generosity. Thank you for taking such good care of us, keeping us cool, and helping us transform our backyard into some place truly unforgettable for the Breathe Bravely Backyard Bash.

As always, the music made the evening and it couldn't have been more meaningful. Thank you to dear friends of mine and advocates of Breathe Bravely, Martha & Mr. Stai. What you both shared that evening was absolutely priceless and so meaningful. Thank you!

One of my favorite elements of the evening, of course, was the food. Not only was the food delicious and so fun to partake in, but the people who made it are what made it so special. The wood-fired pizza and the genuine kindness shown by Kyle & Nicky at Skipping Stone Mobile Wood Fired Pizza is something that helped make the celebration so memorable. 

Speaking of food, we cannot forget what has become the signature dessert of our event: the Red Velvet Cake made by Darla. Not only is it delicious but it's made with the most genuine of love, making it all the more unforgettable.

Most of all, however, thank you to everyone who came out and celebrated with Breathe Bravely and to each of you whom so passionately support us. We are so very grateful for each of you and your generosity. I hope this year's Breathe Bravely Backyard Bash was a fun and special night for each of you! Here's to an incredible year ahead.

 

Truly grateful,

Ashley

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : Why We Walk

Walking is something that most all of us take for granted and the power of a single step never really crosses our mind. But a simple step for some can symbolize so very much - like for people whose lives have been impacted by cystic fibrosis. 

Great Strides for CF is so much more than just a walk. It's a significant act of empowerment, of tenacity, and of hope. Within each step lies an untouchable determination dedicated to fighting for those with CF. Fighting to give everyone impacted by CF another day to pursue and live out their dreams uninhibited by a disease vying to steal every breath. 

The Cystic Fibrosis Foundation was established in 1955 and has been at the forefront of drug research and development - leading to decades being added to the lives of people with CF. Because of the fervent support of friends and family of those with CF, the CF Foundation has been able to invest in the futures of those living with the disease - being on the cutting edge of research and a cure. Without this continued support and the creation of these life-extending therapies, many of our lives would be immensely different. It's safe to say that some of us may not be here today without such support. Each step that has been taken in the last 30+ years has made a significant impact on each life that is affected by CF. It is for each step we are so thankful.

But we are not finished.

Life-changing therapies and drugs are being created at this very moment. Drugs that could potentially give us the possibility of more steps. Walk with us this Great Strides season. Take a step for CF and every person whose life has been changed because of the disease.

Learn more about the CF Foundation.
Learn more about Drug research and the current Drug Pipeline

To learn more about Great Strides or donate to a team click: Great Strides Team Ashley

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : A Month of Awareness

For the 30,000 people in the United States cystic fibrosis doesn't just make its presence known one month out of every year - it is a part of every day of every year. There is no break. There is no simply forgetting about CF. There is no running from it. 

The month of May is specifically dedicated to giving voice to cystic fibrosis and all the lives it unapologetically touches. It's meant to shine a light on the tenacious individuals, families, and friends who tirelessly live with this disease 365 days a year. It's meant to highlight the strength of all those impacted by CF and the relentless dedication to finding a cure.

This month, Breathe Bravely will be sharing ways in which you can support cystic fibrosis. CF may be a powerful force, but its tenacity and strength is no match to the courage and determination embodied by the CF community.  

How are you giving voice to CF this May?

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Warmest Wishes

As we look back on 2016, Breathe Bravely is immensely grateful for your unwavering support and your enthusiastic spirit for our mission. Thank you for giving voice to cystic fibrosis and helping us breathe bravely!

2017 has the makings to be an extra special and impactful year for Breathe Bravely, and we couldn’t do it without each of you. From Breathe Bravely to each of you – warmest holiday wishes and a happiest new year!
 

Want to make year-end contribution to Breathe Bravely? There's still time! Donate now! A reminder that Breathe Bravely is a 501(c)3 organization and your contribution is a tax deductible.

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : The Gift of Life

Cystic Fibrosis is a complex and sometimes confusing disease. Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.

For the CF community, this Fall has been a difficult one with a great number of loved ones lost to cystic fibrosis. It makes us hold those we love living with CF a little tighter and want to fight even harder for every person impacted by the disease. This holiday season undoubtedly will be one filled with some heartache as the memories of those lost pour through minds and hearts of their family and friends. 

Some whose journey ended too soon were awaiting the call for their perfect match of lungs. They were eagerly hoping for the call for a life-saving double lung transplant - a call that did not come in time. For other friends in the CF community they faced chronic rejection post transplant. But thanks to a selfless donor they were given the chance to extend their lives - living boldly and fully with the extra time they were given thanks to a double lung transplant. Without a transplant they would have not been given that second chance at life - even if it were still cut too short due to complications and rejection.

Without question, a double lung transplant at the end stages of CF can be life saving. But the truth is, for those who decide a transplant is the right choice for them there are not enough registered organ donors to fulfill the need that is present. But, we each have the power to change that and honor the lives of those we've lost. Give the gift of life this holiday season - become an organ donor while encouraging your friends and family to do the same. It's a simple gift that will have a lifelong impact.

Register Today: https://www.donatelife.net/

Please take a moment today and remember the beautiful lives that our CF community has lost and keep their loved ones close to your heart this holiday season. 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

5 Tips to Help Protect those with CF this Cold & Flu Season

It’s that wonderful time of year again - the start of cold and flu season. A cold or flu for most can be a nuisance and an inconvenience that lasts one to two weeks and the worst of it lasts just a few days. But for someone with CF it can mean months of oral and IV antibiotics, a trip to the hospital, the loss of lung function, or even fatality. Here are 5 helpful tips to help those you love with CF stay healthy:

  1. Wash your hands. A lot. The best defense against spreading germs and limiting contamination is by making sure your hands are clean. The cold and flu virus can live on your hands without you being infected but you can be spread through everything you touch. Don’t have a sink or soap handy? A dab of hand sanitizer will help protect you and those you love.
     
  2. Cover that cough and sneeze. Recent studies have shown that a cough or sneeze travels much farther than originally thought. Up to 200 times farther!

    Also, it’s been found that certain coughs and sneezes can stay airborne long enough to enter ventilation systems, spreading them further and potentially harming more people. Try coughing into your elbow or a tissue followed by washing your hands or a quick squirt of hand sanitizer.
     
  3. Get a flu shot. When you get a flu shot you’re not only protecting yourself from severe complications of the flu but you’re also protecting those with CF or any other compromised immune system.
     
  4. If you’re sick, please stay home. Just a quick trip to the grocery store or pharmacy when you’re sick can put those of us with CF unknowingly at risk.
     
  5. Have plans with someone with CF and you’ve been sick all week or have a cold? Let your loved one with CF know you haven’t been feeling well (or if someone in your house hasn’t been well), so they can make the tough decision whether or not to keep plans. It’s not fun having to cancel plans because of such a risk but it’s better to be safe than sorry.
     

Help us all stay healthy this cold and flu season! For more information on the dangers of germs and cystic fibrosis please visit our previous post, "Clearly Invisible : Danger."

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : A Cause for Celebration

Cystic Fibrosis is a complex and sometimes confusing disease. Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.


Celebration

While a life with cystic fibrosis may have its share of days that are difficult and burdensome, there are indeed days that are filled with unprecedented celebration in our CF community. With continued hope there surely will be many more days of celebration to come.

This past week on Thursday, September 29 there was cause for great celebration in the world of CF. Orkambi, a specialty medication that treats the underlying cause of cystic fibrosis for people with two mutations of F508del, was approved by the FDA for children as young as six. This news gives such hope to so many families and people with CF. In July of 2015 Orkambi was only approved for people with cystic fibrosis twelve years of age and older.

Orkambi and Kalydeco
There are now two life changing drugs of its type in the fight against CF: Orkambi and Kalydeco. These medications are the first of their kind approved by the FDA in the CF community. These medications do not treat the symptoms of CF but target the underlying cause of CF down to the genes themselves. These medications aim to improve the functionality of the CFTR proteins. They aim to make the mutated genes work more normally in hopes that the progressive debilitating effects of cystic fibrosis will be slowed or minimized. This is not a cure and there’s no guarantee that all who take it will experience a great margin of positive change. But it is surely life changing and something to greatly celebrate. 

Within the last twenty-five years there have been incredible advances in the treatment of CF. Advances that have allowed many of us to live well beyond that in which our parents were told. Advances that allow every day to be a celebration for those of us living with CF. Advances that give us hope that someday all people with CF regardless of their mutations will be eligible for such life-changing drugs. Advances that will give us all another day to celebrate together.

 

For more information about CF mutations and the cause of CF please read: The Cause of it All

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : Signs & Symptoms

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.

Even though CF is an invisible disease on the outside the symptoms and complications associated with the disease are not. Breathe 3-65 has shared the complications of CF in our previous post Simply CF : It’s Complicated but what are some of the specific signs and symptoms of CF?

Cough – Because CF impacts the lungs and causes extra thick, sticky mucus to build up in the body, the respiratory system’s defense amidst such irritation and complications is persistent coughing. Coughing is the body's way of trying to move the mucus up and out, clearing the airways. With this extra irritation can come wheezing and breathlessness.

Poor Growth – That thick, sticky mucus also affects the pancreas and its ability to effectively work to produce enzymes. Without those key enzymes the body is unable to adequately take in vital nutrients and effectively digest food. This can lead to malnourishment and can stunt development.

Respiratory Complications – That excess of thick, sticky mucus in the lungs is a perfect place for bacteria and infection to thrive, causing frequent lung infections such as pneumonia or bronchitis. It can also cause people to have frequent issues and infections associated with the sinuses.

Salty Skin – Before there was even such a name for it, parents of children with CF would note a salty taste to their children's skin when they would kiss them. CF causes the body to produce an imbalance of chloride in the body making sweat extra salty.

Digestive Complications – Because of complications with the pancreas, problems with digestion are common. This complication then causes difficulties with bowel movements, frequent greasy or bulky stools, or intestinal blockages.

The body is incredibly complex. Systems within our body work both simultaneously together and separately for the same ultimate purpose – to live. Much of what keeps each of us alive takes place beneath the surface of our skin and is invisible to the unknowing eye. CF is an invisible disease and most of its symptoms are equally invisible to the eye. However, the symptoms and signs of CF are anything but invisible within the bodies of those affected. 

 

 

Only a doctor or trained medical professional can diagnose cystic fibrosis. For further questions or to discuss symptoms in detail please contact your doctor.

Source: CFF.org

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : Put to the Test

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.
 

The beginning of every Cystic Fibrosis (CF in every occurrence after) story starts with a series of tests. The tests prove a positive diagnosis. But, what exactly are the tests that confirm the presence of CF?"

Newborn Screening
In every U.S. state, babies are now required to undergo newborn screenings upon birth. The screenings are for a myriad of serious medical conditions, including CF.

Early detection is key to monitoring any condition and implementing treatment, especially CF. Within the first few days of life, a blood test is done to check for certain medical conditions. If the blood test comes back positive for CF another test will be conducted to confirm or rule out a CF diagnosis. Early intervention of CF is crucial to ongoing care, quality of life, and preventing lasting damage caused by the disease.  

Sweat Test
If a person is showing symptoms of CF or a newborn screening is positive for CF, a sweat test will be done to confirm a CF diagnosis by an accredited CF Center. A sweat test can be done at any age. A sweat test measures the amount of salt in a person’s sweat. People with CF have a high concentration of chloride in their sweat due to the genetic nature of cystic fibrosis. Depending on the amount of chloride found in the sweat of the individual tested determines the CF diagnosis.

Genetic Testing
If there is any discrepancy in the outcome of the sweat test results, genetic testing will take place. A blood sample is checked for specific defects in the gene that causes CF.vA genetic test is also done after a positive diagnosis to help learn more about the person’s mutations.  

Upon a confirmed diagnosis of cystic fibrosis, an individualized treatment plan will be put into place and a new story will be written by all those impacted by that diagnosis of cystic fibrosis – each unique and born of their own great tenacity.

 

To learn more about CF testing please visit https://www.cff.org/What-is-CF/Testing/

 

 

 

Source: Cystic Fibrosis Foundation

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : 1,800

It takes two copies of the defective CFTR gene to cause cystic fibrosis, as we talked about in the Simply CF: A Common Carrier. But did you know that the two mutations that cause CF do not have to be the same? There are over 1,800 different mutations that cause CF! Some mutations are more common than others. For example, the mutation known as Delta f508 is present in over 70% of the CF population while the remaining 30% are made up of rare or nonsense mutations.

 

So it would be easy to think that those with the same mutations of CF would have the same symptoms and complications, right? Actually, that isn’t so. Individuals with the same mutations may not experience the same symptoms or complications. Each mutation and combination of mutations manifests differently in each unique individual with CF and does not define the severity of the disease.


A person with CF is only 1 of 70,000 people in the world, and with 1,800 different mutations that cause the disease that makes each person with CF even more unique! 
 

 

 


Source: Cystic Fibrosis Foundation & John Hopkins CF Center

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : It's Complicated

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way. 

 

 

CF is a complex disease that does not isolate itself to one specific area of the body. Its primary effects may manifest in the lungs and pancreas, but its devastation can be felt through every major system of the body.

The Lungs - Because of the defective CFTR protein talked about in the previous post, “Simply CF : The Cause Of It All”, the body produces a thick sticky mucus that clogs the airways and respiratory system. This thick mucus is a perfect environment for deadly bacteria and infection to thrive leading to clogged airways, scarring, excessive and recurrent respiratory infections, and decreased lung function.

The Pancreas - Sticky and thick mucus cause plugging in ducts of the pancreas, preventing the release of normal enzymes to aid in digestion and absorption of fats and proteins. This can result in malnourishment and a failure to thrive. Some people with CF have difficulty gaining and maintaining a healthy weight.

Sweat glands - A loss of too much salt through a person with CF's sweat causes an imbalance of vital minerals and dehydration in the body. 

Much More - Because these main organs and systems are directly affected by cystic fibrosis, secondary complications can arise in other vital organs and systems in the body: cardiovascular system, reproductive system, liver, gallbladder, kidneys, CFRD (Cystic Fibrosis Related Diabetes), bowel obstructions, increased risks of cancer, sinusitis and nasal polyps, osteoporosis, and arthritis. 

 CF is a complex and complicated disease that manifests itself differently in every person diagnosed. The disease affects each person in so many different ways making treatment of the same disease in two different people a challenge. It is so important that new treatments continue to be researched and studied - giving insight into CF's complexity that may lead to life-altering treatments for each unique person with CF.  

 

 

 

Source: John Hopkins CF Center- hopkinscf.org

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : The Cause of It All

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.

Salty

For many decades parents noticed a distinct salty taste left upon their lips when kissing their child's skin. Today, we know that salty skin is a prominent characteristic of CF and is a result of the defective CF gene. That salty skin is only a small glimpse, however, into a systemic imbalance with life-altering implications hidden within every cell.

So what exactly causes people with cystic fibrosis to be so salty and what complications arise from such saltiness? Well, it’s the very cause of cystic fibrosis itself:

The Cause Of It All

Cystic Fibrosis is caused by a genetic mutation of the gene that is responsible for creating the CFTR protein. Two copies of the faulty gene must be present for a person to have cystic fibrosis. The CFTR protein is an important protein that transports salt into and out of our body’s cells. As salt moves in and out of cells, so do water molecules.

 

In CF, the defective CFTR proteins disrupt the important salt regulation and transportation of it into and out of the body’s cells, resulting in a salt and water imbalance on the lining of organs such as the bowel, pancreas, and lungs. In a person with normal CFTR proteins, as salt moves out of cells, so does water and the body is able to thin and move mucus on the linings of these organs in a normal manner. But in a person with CF, the imbalance of salt results in too little water causing a buildup of thick and sticky mucus in the body. The sticky mucus and the inability to clear it causes reoccurring respiratory infections and other systemic complications throughout the body. (More information to come on CF’s systemic effects in future Simply CF posts). 

Finding Balance

Salty skin and sticky mucus. They go hand in hand and are the underlying results of the defective gene and faulted CFTR protein that cause cystic fibrosis. So what if the CFTR protein in a person with CF could be corrected or restored to a more normal state? It could be life changing. Kalydeco® and Orkambi® are two medications available in the US that help restore CFTR protein function. These treatments are approved for patients with specific mutations and are not a cure but significantly improve health.  Further research and treatment development are underway to correct the defective CFTR protein.

 

 

Want to learn more about the CF gene and how someone is born with CF? Read “A Common Carrier” – a previous post about CF genetics. 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : A Common Carrier

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way. 

 

A Common Carrier

Approximately 30,000 people in the United States have Cystic Fibrosis. But, did you know that 1 in 31 people in the US are carriers of the CF gene? That’s about 10 million Americans! That could be you!

 

How does someone get CF?

In order to have CF, both parents must be carriers of the CF gene. However, even if both parents are carriers of the CF gene it does not guarantee that the child will have CF. A child must receive a defective CF gene from both carrier parents in order to be diagnosed with CF. If the child receives one defective gene and one normal gene, the child will also be a carrier but will not have CF. If both parents are carriers, there’s only a 25% chance that their child will inherit two sets of the defective gene. Every year, about 1,000 new cases of CF are diagnosed in the United States.

 

What does it mean to be a “carrier?”

A carrier has a single copy of the defective CF gene and a single copy of a normal gene. Carriers do not have Cystic Fibrosis.

 

Be the first to know about what's going on at Breathe Bravely and Breathe 3-65!

Subscribe to receive updates and new posts!

SUBSRIBE -

 

 

 

 

 

Source: Cystic Fibrosis Foundation

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.