Learn more about the #1 genetic killer of children and young adults in the United States, Cystic Fibrosis, and what you can do to help!
My boyfriend and I recently found out I’m pregnant for the first time, I’m 22 and I have Cystic Fibrosis and I’m worried about having a normal healthy pregnancy, that the baby will be ok, etc… Does anyone know of some good tips to ensure as healthy a pregnancy as possible?
I have identical twin girls (they’re 16) who have Cystic Fibrosis, they have always been in the same environment, but they seem to have two different severity levels of Cystic Fibrosis, one of my twins is sick very often and has had to spend numerous amounts of time in hospital, has much lower lung function, needs a feeding tube, and will need a lung transplant eventually, my other daughter does not get sick and get infections that much and has always been a lot stronger. What actually causes the differences since they are identical twins?
I posted question about there being very little awareness as far as Cystic Fibrosis is concerned. Cystic Fibrosis is 1 of the top most lethal diseases in the United States 2nd only to Diabeties. The information I read on this didnt state where Cancer falls. My life has been impacted by all 3 of theses diseases. I have 2 neices with type 1 Diabeties one of them went undetected at birth which caused her to go blind, deaf and be mentally chalenged, my father, his father, a brother, and my sister Dee who also had Cystic Fibrosis that caused her to get type 2 Diabeties.I had 2 grandparents who died from cancer, and a sister who had it. I dont think its fair for 1 disease to get more attention to others even if it means saving the Titantic or 1 person on a row boat wouldnt you want to save them all? I have come in contact with MANY KIDS with CF 2 of them being my sisters Misty&Dee who have both passed away. I want to make people more aware. I have a plan would you help? In their memory.
I want to know if anyone has any experiences/knowledge here, such as how long do you have to be in the hospital after the surgery? What is the quality of life like after a double lung transplant? Will the I develop Cystic Fibrosis problems in the new lungs? I’m 17 and will have to have a douple lung transplant eventually because of my Cystic Fibrosis and poor lung function because of the disease. I’m nervous about it.
I’m pregnant with identical twins, I’m early on in the pregnancy, but I have Cystic Fibrosis so I’m worried that there may be complications and I won’t have healthy babies (they don’t have the disease though, they tested negative). But what are some good tips to have a healthy pregnancy and make sure the babies are born ok?
On a scale of 1-10 (10 being closest to “normal” living), where does one with CF fall? How does it affect things emotionally? Financially?
I am doing a project on Cystic Fibrosis, and some (well most) sources are too general in explaining how life really is.
My little sister is a teenager and has Cystic Fibrosis. Her doctor said she will need to have a double lung transplant eventually…her lung function is not good, and she gets frequent infections. She also has a lot of problems with digesting and has to have a feeding tube to provide extra nutrients. I was wondering, does anyone who’s knowledgeable know what the life expectancy is after a double lung transplant considering she has Cystic Fibrosis? And the probability of just surviving the lung transplant surgery?
Am doing a project about cystic fibrosis and am wondering how do people know if they have it?What are the signs that you have it?
Cystic fibrosis is a serious genetic disorder with reduced life expectancy. A common genetic disorder among Caucasian people, this disease occurs in one of every 3,200 Caucasian births. The mutation in the gene varies according to the geographical background. Cystic fibrosis occurs in one out of every 15,000 African-American births. The life expectancy of cystic fibrosis patients has been increasing over the past 40 years. In the 1980s life expectancy of people with cystic fibrosis was 14 years.
10 years back, the life expectancy of a person with cystic fibrosis was around 18 years. Today it is 35 years. The median life expectancy of a newborn with cystic fibrosis has increased from 4 years to 32 years. It has been estimated that there has been more than 10 year increase in the average life expectancy of affected people in North America. Over 90% of the affected infants now survive beyond one year. Studies show that life expectancy of children will exceed 40 years. Life expectancy of individuals with adequate pancreatic function can be more than 50 years.
In the United States, approximately 30,000 people have cystic fibrosis. Around 1,000 new cases of cystic fibrosis are diagnosed each year. One child of every 3,500 is born with cystic fibrosis. In Canada, the overall cystic fibrosis birth rate from 1971-1970 was stable. From 1988, cystic fibrosis birth rate increased to a rate of 1 in 3,608. Cystic fibrosis birth rate is stable for the last few years. In the UK, cystic fibrosis birth is about 1 in 2400 and 4% of the people are cystic fibrosis carriers.
80% of patients are diagnosed by the age of three. 10% of patients are diagnosed at the age of 18 and 3% patients are diagnosed in adulthood. Vast improvements in treatment have increased the life expectancy of cystic fibrosis patients.
By: Kent Pinkerton
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