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    16 Reasons Why You Should Know What Cystic Fibrosis Is

    Cystic Fibrosis (CF) is the number 1 most common genetic killer of children and young adults. You can look up the definition of CF but the reality of the disease and those who live with it deserve your attention far beyond a paragraph in a 9th grade biology textbook.

    1. Because OneRepublic Thinks CF Deserves Recognition

    View this video on YouTube

    Via youtube.com

    The video of the song "I Lived" features 15 year old Bryan Warnecke of Colorado, who has cystic fibrosis. The video shows how despite his rigorous treatment regimen, which includes 40-50 pills and twice per day breathing treatments, Bryan is a double black diamond skier, avid skateboarder, long distance cyclist and one of the best hockey goalies in the state.

    2. The Probability of You Being a Symptomless Carrier of CF is Higher Than You Might Think

    About 30,000 children and adults in the United States (70,000 worldwide) have CF. An additional 10 million people — about one in every 31 Americans — are symptomless carriers of the defective CF gene. CF is most common in white people, but is found in people of all races and many ethnicities.

    3. But How Do People "Get" CF?

    4. Because a Writer For Upworthy Was Reduced to Chills When She Heard Morgan Grindstaff's Real Life Take On CF

    View this video on YouTube

    Via upworthy.com

    "I've Never Heard Someone Describe Their Illness Like This. I've Got Chills."

    Curated by Darcie Conway

    It's the difference between living and just existing, told with pure, raw emotion.

    Transcript:

    Morgan Grindstaff: So the other day I was walking to this department store. I passed by the perfume section and a scent that went by the name 'Delicious' caused my respiratory system to go into seizures.

    See when you have a chronic illness, especially a chronic illness of the lungs, any little thing can send you into a coughing spasm. The littlest thing can immediately make your lungs tickle and flutter like a litter of kittens are having an orgy inside your chest. Also a coughing spasm of cystic fibrosis sound similar to an eighty-year-old smoker with swine flu mating with a rabid growling lion.

    Once it stopped and I came to the conclusion I wasn't dying, I glanced to my left and see a lady looking at me as if I spat of black plague out of my chest and infected everyone. I then proceed to tell her, "Oh it's not contagious I have cystic Fibrosis, it's a lung condition." To which she cuts me off and responds, "Oh I had a cousin who had friend who had nephew who had dog who had an owner who had a cat, who had a cousin and had something like that. It's like asthma right? Well, my great great grandpa said all you have to do is grind up some ginger root and the teeth of a sabertooth tiger and snort a few lines and you'll be as good as new."

    My brain immediately began scouring every sentence of the Wikipedia page on the definition of cystic fibrosis. I start to open my mouth to speak. Cocked and ready to release an atomic bomb of knowledge on this lady that will make her head spontaneously combust. As I started to talk, my voice cut off. I was about to go over the usual information about CF to this lady as I had done numerous times to countless people. See it's easy to explain to someone the physical and medical side of having a chronic illness. To rattle off every fact from every website you know, but I stopped because I thought to myself, "What if I actually told her what cystic fibrosis was?"

    Not the medical aspects, not the stats and the statistics from a Wikipedia page. What if I told her that cystic fibrosis is hearing other kids talk about how they wanted to be firemen and police officers when they grow up as a child, when all you can think about is hoping you get the chance to grow up? What if I told her that CF is trying to make the dialogue between your action figures louder than the sobs you hear coming from your mother in the next room over the fear that she may have to bury her child? What if I told her that Cystic Fibrosis is being a let down to your father because you were sick and couldn't be the hardworking man that he always imagined his son to be?

    If I told her that the the age of survival for someone with CF is 41-years-old, but I had to say goodbye to more brothers and sisters under 25 than I can count? And by brothers and sisters I do not mean by blood, I mean my brothers and sisters in arms who everyday fight to take a breath.

    What if I told her that CF was looking some of those brothers and sisters in the eyes while they are laying in a hospital bed and telling them, "Just keep fighting, you got this, you'll be fine." When in my heart I know they'll be gone soon.

    What if I told her that CF was finding the bottom of Jack Daniels bottle and talking to the ashes I keep around my neck, because it's the closest I'll ever get to talking to my brother again. That I've lost more people I love to this disease by my age of 24 than most people will lose in four life times.

    That it's keeping the shades pulled and when you finally think you have the strength to open them and see the sunrise, crying your eyes out again because you realize that so many people will never get to see something so beautiful again. That it's depression, that's is like being suicidal, your lungs the gun that never really have no balls to pull the damn trigger.

    That cystic fibrosis is an atheist falling to their knees and praying to a god to please not take another one of your friends. That having to receive government assistance because some days you can't muster the strength to get out of bed to hold a job makes you less than a cockroach and worthless in the eyes of society.

    That cystic fibrosis is people telling you how lucky you are that you get to stay home when they bitch about the Mondays. When they better thank God that they get to bitch about the Mondays. That it's not being ready to hold a steady relationship because you've been burned too many times, that you've heard, "I just can't deal with this so many times you've given up. That you don't blame them because no one wants to watch someone else die, but you pray someone will stick it out, because goddamn.

    What's a true version of love than than loving someone enough to watch them die. That it's countless doctor visits ,surgeries, needles, procedures, nurses, pills, breathing treatments, tears, goodbyes, heartaches, that it's pain and that it hurts.

    But there's two sides to every coin. Cystic Fibrosis is also love, it's waking up every morning and appreciating those damn noisy birds outside your window because they are alive and so are you. Its first hand witnessing unconditional love for a woman who has not only been a mother, but a father, and a nurse and a friend and a rock. It's never taking anything for granted because you know how quickly it can be striped away. It's growing up in a largely prejudice homophobic family, but realizing at a young age that all those people are morons because inside the four walls of a hospital it doesn't matter what color your skin is, it doesn't matter what gender you love, all that matters is connecting to another human being who knows what it's like to lay in hospital bed for weeks at a time, and wonder if you'll leave through the entrance or through the morgue.

    It's your friend staying with you in the hospital until 12 a.m. on your birthday so you don't have to be alone, and covering the walls in star walls party decorations. It's a humorous welcome-back sign on your hospital door from nurses that have became your family. It's knowing the difference between being alive and merely existing. I looked at that lady and flashed a smile, and I just walked away.

    There may be small errors in this transcript.

    5. Because of Hollywood's Depiction Of CF

    6. So What is Cystic Fibrosis?

    7. Common Symptoms of CF

    8. Because CF is an Invisible Disease

    CF only affects the inside of your body. Because you cannot see their lungs or pancreas, many assume they are healthy.

    9. Because CF is a Progressive Disease

    As you age with CF your prognosis only worsens. Their is no remission, no recovery, in most cases when you lose lung function it is gone for good.

    10. Because of Transplants

    As people with CF age and their condition worsens their only option is a transplant of the organ(s) that are failing them. The most common transplants people with cf (pwcf) face are double lung transplants followed by liver transplants. The success rate for a lung transplant is measured in time with over 80 percent of recipients alive 1 year after transplantation, and over 50 percent alive after 5 years. A transplant is not a cure and brings on other worries like organ rejections. In recent years transplant recipients have face two double lung transplants.

    Currently, there is no cure for CF. However, specialized medical care, aggressive drug treatments and therapies, along with proper CF nutrition, can significantly lengthen and improve the quality of life for those with CF.In 2012, the U.S. Food and Drug Administration approved Kalydeco™ (ivacaftor) — the first drug to treat the underlying cause of CF in a small group of people with a specific mutation of the CF gene. In 2014, Kalydeco was approved for people ages 6 and older who have eight additional CF mutations.It is too early say whether Kalydeco will be an actual cure for those who are taking it. However, the drug has shown that it is possible to target the defective CFTR protein that causes CF and improve key symptoms of the disease. Kalydeco is now being studied in combination with other potential therapies to treat people with the most common CF mutation.Kalydeco also offers a roadmap that could help advance the discovery and development of more lifesaving therapies for all people with CF. The CF Foundation continues to support cutting-edge research to address the root cause of CF, and maintains a robust pipeline of potential therapies targeting the disease from every angle. Research to find a cure for CF has never been more promising.

    13. Improvements Made In The History of CF

    The Food and Drug Administration looks set for a great 2012; with a few days left to go, it has approved 40 new drugs and vaccines, one of the most impressive totals ever, according to data from Pharmaceutical Approvals Monthly and FDA press releases. In this haul, one medicine stands out for its scientific and medical importance.Kalydeco, for cystic fibrosis, is a triumph of genetics and drug development, the first medicine to directly affect the genetic defect that causes the disease. It will only help 4% of the 70,000 people who suffer from declining lung function, damaged pancreases, and shortened lives due to CF worldwide, but in those few it has a dramatic effect. It makes medical history for three reasons:It's a genomics triumph: Francis Collins, later famous for heading the Human Genome Project and then the National Institutes of Health, discovered the gene that, when mutated, causes cystic fibrosis 23 years ago. Kalydeco is the first drug to directly affect the defects caused by these mutations, leading to improvements in patients' lung function.A patient group powered its development: Kalydeco would probably not exist were it not for the Cystic Fibrosis Foundation, which funded its early development at Vertex and gets a royalty on the drug. This success paved the way for other disease foundations including the Michael J. Fox Foundation, Myelin Repair, and the Multiple Myeloma Research Foundation.Its price: Kalydeco, given alone, will only help a few thousand patients the world over. Like other drugs for very rare diseases, its price is very high: $294,000 per patient per year.

    15. Because Parents Should Not Have to Bury Their Children

    It is not possible to accurately predict how long a person who has CF will live. Many different factors — for example, severity of disease and age at diagnosis — can affect an individual's health and the course of the disease. Recent research has shown that the severity of CF symptoms is based partly on the type of CF gene mutations a person has.

    Even though the median age sits around the early 40's there are still children and young adults who are dying from this disease every day.