1. Because OneRepublic Thinks CF Deserves Recognition
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
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.