Cystic Fibrosis

Cystic Fibrosis questions and answers

Learn About Symptoms and Treatment of Cystic Fibrosis.

Q: Cystic Fibrosis?
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.

A: Roseykat, it is wonderful to do something in memory of your sisters. Check out the cff.org site and click on the link to local chapters to see where there is one near you. Be warned, as in any organization, it might be hard to just walk in the door and be accepted as someone who is serious about helping (sad to say), but go anyway. My daughter died almost five years ago and her old grade school just held "Sarah's Walk" this past Friday, which is a walk-a-thon held in her memory to raise money for the CF Foundation. They also give an award to a graduating student every year in her memory. This is odd. I just did a search for "Sarah's Walk" and found out that another school - hours and hours away from us - is also holding a "Sarah's Walk" to raise money for CF. This is for a different Sarah, but it's ironic that both "Sarah's Walks" are for the same cause. When our community built a new hospital, we donated the money to help equip the Pulmonary Function Test Lab and there is a sign stating that the room is in her memory. This doesn't promote CF awareness, but it does preserve her memory in an appropriate location. We continue to support the CF Foundation as well as the CF Center where Sarah was treated for her entire life, as they have active research projects. Maybe you could help raise some money to support CF research. What's your plan?

Q: Cystic fibrosis?
I dont have Cystic fibrosis but I am a carrier of it. What are the chances that my children will be carriers. and are there any side effects of being a carrier?

A: OK first whoever you marry should be tested for the CF carrier gene. IF he is a carrier then its a 1 in 4 chance your child will have cystic fibrosis. If he is NOT a carrier then your child won't have it but has a 50/50 chance of being a carrier of the gene. there are no side effects of being a CF carrier. For any child to actually have cystic fibrosis as the dominant gene BOTH parents have to be carriers of the gene.

Q: cystic fibrosis?
my 33 year old brother has just been dignosed with cystic fibrosis after undergoing tests for fertility treatment. he has shown no symtoms and is healthly. will this disease stay dormat or show symtoms in the future. how will this affect him?

A: cystic fibrosis is a genetic disease. it is represented by the recessive allele of the CFTR gene. in order for the disease to be expressed fully, both of the genes in the homologous pair must present the cystic fibrosis allele. however, if only one of the two genes in the homologous pair presents cystic fibrosis, the the disease will not be fully expressed. in case of your brother, he probably has only one copy of the defective CFTR gene that presents cystic fibrosis. that is why he is mostly asymptomatic and will stay that way for his whole life. he will however have to be cautious when it come to his children. if he is already married, he and his spouse will need to be screened to see if his spouse carries defective CFTR gene as well. if so then his children will have a 25% of being affected, 50% chance of being a carrier like him, and 25% of not being affected or a carrier. if his spouse doesnt carry the defective CFTR gene, then his children will have a 50% chance of being a carrier and 50% chance of not being a carrier. if he is not married and does not have children, he will need to consider these odds before planning on having children. hope this helps...... dont worry about your brother, he is going to be fine as he only has one copy of the defective gene and is asymptomatic.

Q: I have symptons of Cystic Fibrosis. Is it possible to start show the symptons in my 30's?
I am having a hard time breathing and seem to have attacks that come on all of a sudden. Also I t feels like something stuck in my lungs..I cannot remeber any signs when I was growing up. Is it possible to start showing signs of cystic fibrosis in my 30's?

A: Yes, it is possible. Some of the previous answers are unbelieveable. No, you don't have to be diagnosed prior to 2 years old and NO you don't have to spend your teenager years in the hospital. Some of you are reading out of a 1950's medical journal. There are many different mutations with different manifestations. There are MANY different forms of CF and there are documented cases of people being diagnosed in their 30's, 40's, 50's , 60's etc... Good Look and I hope you find what is ailing you.

Q: What is the average life expectancy for people with Cystic Fibrosis?
I'm pregnant with my first baby and I got some tests done and the doctors informed me that my daughter will have Cystic Fibrosis. My mother had a brother and sister who died from the disease when they were quite young. Anyway, I'm wondering what is the current life expectancy for children/people with Cystic Fibrosis and how can you best take care of them to maximize their life?

A: more than 37 years old

Q: What causes differences in the severity of Cystic Fibrosis?
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?

A: Different mutations of the disease may play a part in this. However, this cannot be ruled at the answer either. For example, I have CF as well, my mutation is the G551D, and right now I am currently in a study with 2 other people at my CF center (about 80-120 in the US hopefully at the end) and even at my center 5 people have this mutation. I am about 50% lung function (this is very good for me) but have spent a lot of time in the 40%. To be in this study your lung function had to be over 40% and stable. One girl is not able to participate because she is under that mark, and one boy is in the 90's so he cannot participate because he is doing too well! I think that Cystic Fibrosis is still really misunderstood, and not everything is known yet about it. Everyday there are new treatments that are developing to make life better. Right now I am a lot healthier than my older sister who does not have CF! I have not been ill in nearly a year, which is amazing to me because for about 3 years I consistently had IV therapy every 3 to 4 months for about 2 months at a time.

Q: Is a cystic fibrosis screening test required when you are having an IUI procedure done with donor sperm?
The fertility clinic I am going to requires I do a cystic fibrosis screening test before being having an IUI procedure with donor sperm. I do not want this screening, and do not think I should be required to take it. It also costs $150 and takes 4 weeks to get the results. Does anyone know if this is truly a requirement? I am having trouble finding any information online. Thanks!

A: You should be able to have this screening done at your OB office and have it covered by insurance. I have cf in my family so the screening (blood was taken, that's it) happened when I was 5 weeks pregnant. My insurance covered it and luckily I wasn't a carrier. But I know two people who were screened and who did not think they were carriers, but they were. There's a high prevalence among Caucasians. So it's not a bad idea to have it done if you are white. Good luck.

Q: What are the chances of a woman with cystic fibrosis to get pregnant?
I have cystic fibrosis and i was curious to know the percentage chance of a woman with this disease to get pregnant. i know we can conceive, but with men there is only a 2% chance of them getting their partner pregnant.

A: you could take a look on http://www.getpregnantguides.com/ . did a search on the internet and i found there some great guides

Q: Having Cystic Fibrosis would it be unsafe to travel to a third world country ?
My friend wants to go to Libya for two weeks and invited me to come with her (she has relatives in some village there). I'd like to go to see it such a different place, but I have Cystic Fibrosis and I'm kind of worried about getting sick there, getting an infection there and what I would do if I did. I get sick and get infections a lot as it is. Has anyone had any experience with this or have any advice?

A: Hello! If you ask me, I think you should be fine. I'm not sure what you are using for airway clearance (probably the Therapy Vest?), but have you heard of something called the PEP, or the Flutter? If not, I would ask your Respiratory Therapist for one of those. Basically, what you do is its a hand held device that you blow into that creates pressure deep down into your lungs and helps you cough the sputum out. If you have good insurance, the PEP is around $60 (atleast is was for me). These two work wonders for when we go away on trips, because they are not nearly has big or heavy as the Vest. If you have any questions, or need someone to talk to, feel free to ask. Hope I helped!

Q: What sports/physical activities are good for someone with Cystic Fibrosis?
I want to get my daughter involved in some good sports/physical activities. She's only 3 years old. She has Cystic Fibrosis. We live in New York and walk a lot, she gets out of breath often when we go for walks and walk up hills. But the doctors say its good for her to have to work her lungs. What are the best sports and other physical activities I should get her involved in?

A: Regular exercise improves the health of people who have cystic fibrosis. Exercise helps loosen mucus, encourages coughing, improves oxygen flow, and makes you feel better. Upper body exercises, such as swimming or rowing, increase the strength and endurance of the muscles that are used for breathing. After talking to your doctor about how much exercise is good for your child, encourage your child to participate in sports and recreational activities. Team sports are great ways for your child to stay fit and to interact with other children. Talk to the coach or supervisor about your child's abilities and the important role of physical activity in the treatment of cystic fibrosis. Some people who have cystic fibrosis may not be strong enough to participate in certain activities. Your doctor can recommend the right amount and type of exercise for you. Or, you may work with a physical therapist to develop your own exercise routine.

Q: What is life like for a person with Cystic Fibrosis after a lung transplant?
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.

A: http://www.cff.org/treatments/LungTransplantation/

Q: How much does a lung transplant help with cystic fibrosis?
A couple of days ago, a guy I knew back in my hometown got a double lung transplant. He has cystic fibrosis. I know removiing the lungs takes away the bacteria but does it get rid of the disease?

A: nope it gets rid of the lung problem but doesn't cure the person, cystic fibrosis does not only affect the lungs but the pancreas as well...it inhibits the pancreas' abiltiy to secrete enzymes need for digestion which causes poor growth, fatty diarrhea and deficiency in fat-soluble vitamins. cystic fibrosis is a multi system disease

Q: How exactly is physiotherapy done with Cystic Fibrosis patients?
I'm 20 and my girlfriend is 19. My girlfriend has Cystic Fibrosis and i invited her to stay over for a few days with me at my place. I was kind of surprised when she first told me about her disease. I know she has pretty low lung function and will have a lung transplant eventually. But how is the physiotherapy done and in what ways and how often? Do they usually do it on their own or do they often need someone to help them? Should I know how to do it with my girlfriend?

A: Different people with CF have different needs relative to physiotherapy. Some absolutely need it several times a day, while others only need it on an as-needed basis, and others something inbetween. It is rare that a person can do the chest therapy required to keep the mucus in the lungs moving - although a haf-a55ed job can be done if no one else is around. It is a very person choice whether to have people you are in a relationship with learn to do the personal care required when you have a disability. Some see it as a form of intimacy and are OK with it. Other see it as a job task and want to keep that part of their life separate from their intimate life.

Q: What should I do if my 4 year old has symptoms of cystic fibrosis?
My 4 year old son has had breathing problems and been hospitalized twice for croup, pneumonia once and constantly has a deep cough. His father is a carrier for cystic fibrosis and im not. Should he be tested? His half brother has been diagnosed with CF.

A: Assuming you are certain about not being a carrier, and have been test for it. Then there is absolutely zero chance of him having cystic fibrosis. Every person has two copies of a gene, one inherited from each parent. If a person has one normal CF gene and one abnormal CF gene, then that person is a carrier of CF. Having only one abnormal copy of the CF gene is not enough to cause the disease, so a CF carrier will not have any symptoms. If both parents are carriers of an abnormal CF gene, then there is a chance that each parent will pass the abnormal gene on to there child. Having two copies of the abnormal CF gene results in CF.

Q: What is the current life expectancy for people with cystic fibrosis?
I found out that my twin daughters have cystic fibrosis, what is the average current life-expectancy for people with this disease and how can the you maximize their life expectancy?

A: The predicted median age of survival for people with cystic fibrosis is 37 years. Cystic Fibrosis Foundation www.cff.org CysticFibrosis.com www.cysticfibrosis.com