interesting fact about cystic fibrosis

Fast Facts About Cystic FibrosisCookie Notification TitleCystic Fibrosis by Numbers: Data, Statistics and You Understand Cystic Fibrosis Cystic fibrosis is a rare genetic disorder. It mainly affects respiratory and digestive systems. Symptoms often include chronic cough, lung infections, and shortness of breath. Children with cystic fibrosis may also have problems with increasing weight and growth. The treatment revolves around keeping the airway clear and maintaining proper nutrition. Health problems can be handled, but there is no known cure for this progressive disease. Until the end of the 20th century, few people with cystic fibrosis lived beyond childhood. Improvements in medical care have increased life expectancy in decades. Cystic fibrosis is a rare disease. The most affected group is the Caucasian of the North European descent. About people in the United States have cystic fibrosis. The disease affects white newborns. It is not so common in other ethnic groups. It affects African Americans and Asian Americans. It is estimated that 10,500 people in the UK have the disease. About 4,000 Canadians have it and Australia reports about 3,300 cases. Around 70,000 to 100,000 people worldwide have cystic fibrosis. It affects men and women at approximately the same rate. In the United States, some 1,000 new cases are diagnosed each year. About new diagnoses occur before age 2. Since 2010, all U.S. doctors must review newborns for cystic fibrosis. The test involves collecting a blood sample from a heel prick. A positive test can be followed with a "sweep test" to measure the amount of salt in the sweat, which can help ensure the diagnosis of cystic fibrosis. In 2014, more people diagnosed with cystic fibrosis were diagnosed through newborn screenings. Cystic fibrosis is one of the most common genetic diseases that threaten life in the UK. Approximately people are diagnosed before or shortly after birth. In Canada, people with cystic fibrosis are diagnosed for 6 months; for 2 years. In Australia, most people with cystic fibrosis are diagnosed before they are 3 months old. Cystic fibrosis can affect people of any ethnic group and in any region of the world. The only known risk factors are race and genetics. Among the Caucasians, it is the most common autosomal recessive disorder. The pattern of autosomal recessive genetic heritage means that both parents need to be at least carriers of the gene. A child will only develop the disorder if he inherits the gene from both parents. According to John Hopkins, the risk of certain ethnic groups carrying the defective gene is:The risk of having a child born with cystic fibrosis is:There is no risk unless both parents carry the defective gene. When that happens, the Cistic Fibrosis Foundation reports the inheritance pattern for children as:In the United States, people are carriers for the gene. Most people don't even know. Cystic fibrosis is caused by defects in the CFTR gene. There are more than 2,000 known mutations for cystic fibrosis. Most of them are weird. These are the most common mutations: genetic mutation Prevalence F508delaffectos up to 88 percent of people with cystic fibrosis all over the worldG542X, G551D, R117H, N1303K, W1282X, R553X, 621+1G-title, 1717-1G-titleA, 3849+10kbC-title, 2789+5G+ If you have cystic fibrosis, the protein does not do your job. The result is a thick mucus accumulation that blocks the ducts and the airways. It is also why people with cystic fibrosis have a salty breath. It can also affect how the pancreas works. It can be a carrier of the gene without cystic fibrosis. Doctors can look for the most common genetic mutations after taking a blood sample or a cheek hysop. It is difficult to estimate the cost of treatment of cystic fibrosis. It varies according to the severity of the disease, where it lives, insurance coverage and what treatments are available. In 1996, the health-care costs of people with cystic fibrosis were estimated at $314 million per year in the United States. Depending on the severity of the disease, individual expenses ranged from $6,200 to $43,300. In 2012, the U.S. Food and Drug Administration approved a special medication called ivacaftor (Kalydeco). It is designed to be used by people with cystic fibrosis that have the G551D mutation. It has a price tag of about $300,000 a year. The cost of a lung transplant varies from state to state, but can reach several hundred thousand dollars. Transplantation medications should be taken for life. Expenses due to lung transplant can reach a million dollars only in the first year. Expenses also vary according to health coverage. According to the Fundación Cistic Fibrosis, in 2014:A 2013 Australian put the average annual health cost of treating cystic fibrosis to $15,571 US dollars. Costs ranged from $10.151 to $33,691 depending on the severity of the disease. People with cystic fibrosis should avoid being very close to others who have it. That's because everyone has different bacteria in their lungs. Bacteria that are not harmful to one person with cystic fibrosis can be very dangerous to another. Other important data on cystic fibrosis: Until recently, most people with cystic fibrosis never reached adulthood. In 1962, the expected median survival was about 10 years. With medical care today, the disease can be handled much longer. Now it is not unusual for people with cystic fibrosis to live in their 40s, 50s or beyond. An individual's perspective depends on the severity of symptoms and the effectiveness of treatment. Lifestyle and environmental factors can play a role in disease progression. Last medical review on December 6, 2016More information here

The 5 best things you (Probably) Don't know about cystic fibrosisEmily of Emily's Entourage shares interesting tidbits and lesser known facts about life with cystic fibrosis (CF).1. People with CF can't be together. The thick, sticky mucus that accumulates in our lungs works like a dumb puddy. Thus, when bacteria enter our lungs, they tend to stay forever while the immune systems of healthy people can fight them. As a result, people with CF have dangerous bacteria in their lungs and these bacteria are contagious only to other people with CF or committed immune systems. The good news is that CF is not at all contagious or dangerous for healthy people. The bad news is that the risks of cross infection mean that people with FQ are advised not to be less than 6 feet from one another. In response, we have formed prosperous online communities so that we can benefit from information exchange and support, but there is no denial that virtual connections can never replace in people. For me, this is one of the most difficult things of CF.2. CF and Tay Sachs are tied like the most fatal Jewish genetic diseases. When you think that fatal Jewish genetic disease, you think "Tay Sachs," right? But the truth is that approximately one in 25 to 27 Ashkenazi Jews is a CF carrier, which makes it as prevalent as Tay Sachs. That's why Emily's Entourage is on a mission to get the word out to the Jewish community that CF is their disease, too.3. Our skin is super salty. Back in the day, the salted skin was the distinctive feature of the CF. The reason is that a defective salt chloride channel causes people with FQ to excrete too much salt. In other words, when we sweat, we lose too much salt, which puts us at greater risk of dehydration. If you are hot out and lick someone's skin with CF (with permission, of course!), you will taste how salty they are! You can even see the salt crystallize on your skin. Until today, the diagnostic test for the FQ is called "sweep test" because it measures the levels of salt chloride in its sweat.4. We're deceptive teachers. CF is an invisible disease, which means that, as sick as our lungs and other organs are inside, it cannot be said from the outside. Just by looking at me, you'd probably never guess that I have less than a third of the average lung function or that I'm teetizing on the edge of the lung transplant evaluation. This is a blessing and a curse. The disadvantage is that it is often difficult to appreciate how sick we feel and how difficult daily tasks are because we look so deceptively healthy abroad. But on the back side, it's nice not to use our disease on our sleeve, so to speak, so people see more than our disease when they look at us. Also, looking healthy instead of getting sick is usually a good thing.5. The nickname for CF is 65 roses. Back when, children with CF had problems uttering "cystic Fibrosis". So, they came up with a nickname with a similar ring: sixty-five roses. Roses certainly evoke a much more beautiful image than a disease that threatens life. In fact, the nickname was so stuck that it is still used today and roses have become an unofficial symbol of the CF. Do you have questions about these facts or CF in general? Leave them in the comments section below. No question is too simple or foolish and we are happy to answer anything! 3 Answers Thank you for this very useful information. I don't personally know anyone with CF, but I've heard a lot about it. I feel really bad for someone who suffers from it, and myself I have a disease that just won't leave. So, as much as you could say I don't understand, I can relate, too. And for anyone who reads this with CF, I am keeping you in my prayers and good luck. Thanks for your information, we know someone with her and I have MS and Lupus myself so I had no idea of her and I shouldn't be with them. I'm glad to know all this now. For your sake. She's been living with CF for 30 more years now I'm 15 dx and 20+ sick. I appreciate your information. I understand the invisible part. But I'm glad to know how we can protect ourselves better. God bless you. Stay strong. We are fighters, and pray together for a cure for our disease all invisible and visible diseases. Or just to find a break in this life. He'll come. Keep your faith. God chose us for a reason. I don't know why, but that's how I do it every day. ayne I was the strongest of my family to take her and that's why these only chose me. I'll take one for the team. Excellent reading. Thank you so much for sharing, and I'm so sorry for what you should probably go through. SeanLeave a Reply Save my name, email and website in this browser for the next time you comment. EntouragePO Box 71Merion Station, PA 19066 Tax identification #45-3768161

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