What is the current life expectancy for people with cystic fibrosis? ?

Question

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?

Answer 1

I am 48 years old with cystic fibrosis, doing well, working full-time as a hydrogeologist, am happily married, etc.  Do NOT let this diagnosis get you down.  In fact, your kids actually have a GREAT chance of living a FULL normal life, thanks in part to advanced care now available, and the pending entry of drugs on the market - now in advanced trials with significant success - that treat the CAUSE of the disease.  Do a search for "VX-770" or "PTC124" and you will see.  My doctor (head of the adult CF program at the U of MN) says drugs like these will be available to patients in less than 10 years...so you really can rest assured that your kids will be OK.  You just need to make sure they see a CF specialist for their care (in addition to their general practitioner).  Also, go to the cystic fibrosis foundation website and find the nearest accredited care center near you, so they can get such care.  Believe me, they can have a full life...the only difference is that they need to follow their specialist's medical recommendations re: medications, etc.  I know first-hand...like I said, I'm 48 and doing fine!

Answer 2

That is so sad! I am so sorry! Here might be some helpful information: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.  

Answer 3

Well the life expectancy is around 35 to 40 now. Thats not an average, it's what is likely barring the onset of cepacia. Use a hospital with a CF center that is recognized and recommended by the CF foundation. They will have the top specialists and the latest treatments not to mention the social workers to help you negotiate all the insurance issues. Keep your children active and on top of their treatments. Use the vest as soon as they are old enough and use the alternative herbal treatments to aid in nutrient absorption and to reduce inflammation. This will help in both G.I. and Pulmonary issues. Keep a clean home and cook healthy meals. Always move quickly when fever is present (even low fever) or if sputum has color (green - brown). Make sure you get them doctors that specialize in CF, it is so important. They can and will do things in regards to how they manage the other departments and hospital staff that make all the difference. Speak up during hospitalizations. This will be your home away from home. If you don't like a nurses bed side manor or lack of urgency, ask the charge nurse for a change. You will get to know the good ones. Show your appreciation, be a friend and they will make your stays so much easier. We have our favorites and they have even opened their homes to us during tough times. Character counts. Try not to pity your kids. Meet it head on and teach them to do the same. Live life to the fullest, it is worth living and worth the journey. Have healthy relationships and let the other ones go, you don't need a bunch of drama. You know who is there for you and who isn't. Our son is 23 now and feeling better and better over the past three years.

You may visit us if you like on our home web site where there is more info. Best Regards; The Zarubas   http://web.mac.com/edriczaruba1

Answer 4

oh, my goodness. i am so sorry to hear this. you have my deepest sympathy, but unfortunately i cannot help you. is there a cystic fibrosis group in your area, they could help you out, and I'm sure the girls doctor will have some info for you. i am so sorry, you are all in my prayers, God bless you all.