I never tell people I am one of the oldest, but it keeps on getting repeated in the press. Children born with CF in the 1990s statistically have a 50% chance of living over 35 years of age. When I was diagnosed in 1975, when I was 10 years old, I was not expected to live past my teens, so in that respect I have done very well. I do know of at least two people with CF older than me in Tasmania; take Mark Cage (past president of the Cystic Fibrosis Association of Tasmania!) he is in his 5th Decade and doesn't even look his age!
Cystic Fibrosis is one of the most common life-threatening inherited conditions. It is caused by a defective gene that clogs the internal organs, especially the lungs and digestive system, with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. In the Caucasian race one person in 25 carries the faulty gene, and if both parents carry the gene, a newborn has a 1 in 4 chance of having CF.
The life expectancy of CF patients has been increasing over the past 40 years. Studies show that life expectancy of children born today will exceed 40 years. Life expectancy of individuals with adequate pancreatic function can be more than 50 years.
In the UK, cystic fibrosis birth is about 1 in 2400 and 4% of the people are cystic fibrosis carriers(source <here>).
22 comments:
Congrats on being one of the oldest.So Proud of you and all you have accomplished. Please take good care of yourself and breathe well.
Leah Orr
childrens's author of the 1st ever cf childrens book.
All profit goes to cf research
Kyle's First Crush
www.kylesfirstcrush.com, or amazon.com, or barnesandnoble.com
Oldest I don't think so. I am 54 and live in Arizona. I am very fit, I have traveled the world, work every day, scuba dive, fish, swim, and play golf better than most. I would like to hear from you. I used to speak for the CF foundation here in Phoenix Az. but they quit having me because they wanted someone who looked sicker.(more donations that way) Shoot I outlived my doctor.
Oldest, I don't think so. I am 54 and live in Mesa, Az. I am very fit and live life to the fullest. I golf, fish, scuba dive, I've traveled the world, and work every day. I out lived my parents, and my doctor. I would live very much to communicate with you and possibly make a difference in the world.
I think at 71 I am doing pretty well.Just had my first iv's for 6 years.
Travel as much as I can and in the last few years have been to:
Australia,Italy,Slovenia,St.Kitts and just come back from Canada.
I was diagnosed at 51 always had the cough but nobody knew what it was.
I'm 58 and doing good.
I'm 58 and doing good.
54...58...71... WOW, i am so thrilled to see some of the posed here. i am only 26, but i have great lung functions, and have been doing well with through the years. i curerntly have two children so its wonderful to see people with CF living so long and thriving while there alive, it gives me hope that i will be around to see my children get older, and have grandchildren! thank you for the insiration.
Hi sjabski good to know you are doing well.What country are you in?
Here in the UK I get great care. Is it the same for you?
My lung function is not brilliant at 22% but I function reasonably well.Had a trip to Boston last Sept.
but didn't feel so good. Spent Christmas on the ward and then again 2 weeks later. Now feeling
much better and able to do most of what I want to.
My contact is roy.cole38@gmail if you want to reply direct. I don't go on this site too often.
Keep smiling
Roy
hI sjabski
You can tell I'm getting old, I mixed my 2 addresses. Should read
cole.roy38@gmail.
DUH!
roy
I am 41 and was diagnosed at 3 weeks old. I live in va and I have done very well.. never even used any meds through my teenage years or 20's. now, however, I am on my meds regularly and doing good... I hope to live another 20 years I hope. I have a question for those of you who say you have kids... I have the understanding that CF patients can't have kids, how is it possible that you do? Please respond to me through my email.. ilovemountaindew007@yahoo.com. Thanks, Ron
No you're not. I read an article about a CF patient who was in her 70s.
My mother lived with full blown CF until she was 43, passed in 1987.
hi, my mother has cf and will be 72 in July in Victoria, does anyone know of any older ?
hi, my mother has cf and will be 72 in July in Victoria, does anyone know of any older ?
Update from Roy Cole. 8 visits to ward last year so not a happy bunny
but doing better so far this year. I was told last October that I was entering last stages buy that's just words! Lung function is 21% but I've just come in from the garden after topping up bird feeders and putting up more nest boxes. This year I will be 75 so get free tv licence! Good luck to all.
HI!
I live in california. I have CF and just turned 30. My life exp. was 5 in '84.
I have found that using natural forms of treatment work so much better then most of the medications I use. I still use 4 nebs, and 6 orals but everything else is natural. I use only fully treated water and make most food and juice from scratch.
Im american but I lived in Ireland for 5 years. I had to leave Ireland because I was very sick. The doctors there refused to upgrade meds and give proper treatment. You have at least 6 people in a room at one time! I left Ireland with a 15% lung function and in america thats on the edge of lung transplant time.
Since I moved back over the last few years I have recover my lung functiona and now am at 84%. But that only because I had proper doctors and worked very hard to get there. You cant get there by just doing a few nebs everyday.
I bet the people who are living into there 50s, 60s, and 70s are all people who are working very hard to get there.
I encourage people to do there own research and take matters into your own hands when your health is involved. That dosent mean ignore your doctors but it does mean pay attention to every single detail. Have nothing but positivity in your life.
I have pushed transplant back by 15 years and it all because I woke up and took resposibility.
Thank you for sharing your story about your age. Its inspiring to see CF patients not let the disorder run you life.
Ive watched people I know just give up and fade away because they are too weak. And ANYONE who can say they are past what statistics say we have is awesome!
This is not a race. The only prize is life.
My brother-in-law was born in 1945 & diagnosed about age 5. The symptoms were all there, as an infant. He lived to be 57 yrs. old.
He lived a full life with many medical ups & downs. He did not have children. Will you explain the comment about CF patients couldn't
have children.
Hi I am 20 years old with CF and married with no kids yet. I hope to live to be 100. Currently in the hospital right now. I go in about every other month to 2-3 months. Longest I've ever been out of the hospital was 3 years. If any of you want to get a hold of me, my email is ryans.wife19@gmail.com or ryans.wife19@yahoo.com. Feel free to contact me :)
Please let me know what u have done to rexover lung function!!!! Katrinarod1@gmail.com
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