Thursday, May 8, 2008

CF Statistics that Aren't Frightening

Cystic fibrosis patients are surviving well into adulthood. This change has been rapid and dramatic. Sadly, there's still far too much information out there that can be overwhelming and downright discouraging.

Here is just a smattering of paraphrased information from medical professionals about their optimism (guarded or not) for the future and quality of life for cystic fibrosis patients. Where applicable, I've backed up their quotes with meaningful statistics.


...with only conventional treatments, survival rates for people with CF have improved dramatically...

[Patients continue to] have 100% lung function even 10 years after Pseudomonas colonization

Roughly 85% of the CF patients born in the ‘80’s survive today, and for the CF child born in the ‘90’s, there is no real decrease in life expectancy attributable to CF.

Dr. Birgitta Strandvik, CF Center Director,
University Hospital,G├Âteborg, Sweden

In an average year, between 120-150 patients with cystic fibrosis are given a double-lung transplant.

Thanks to new rules regarding who gets priority on the transplant list, people who are wait-listed for new lungs receive them in under 2 years.

"lung transplantation can improve survival and quality of life for many cystic fibrosis patients."

Jonathan Orens, MD, Johns Hopkins School of Medicine

Pre-natal and Newborn screening for cystic fibrosis allows the child faster access to life-improving therapies and medications.

Thanks to newborn screening for CF, the average age at diagnosis is now 2 years old.

Clinical trials are progressing at a fast pace for therapies and medications to treat the symptoms of CF.

Genetic testing for the most common types of CF mutations is now affordable. A full panel of genetic screening is also available, which makes the future bright for treatments that focus on specific genotypes (i.e., mutations ) of CF.


Matt Todd said...

Good stats. It's nice to hear positive information for a change. Seems that whenever there is an article about CF it is always rather depressing. If you were to have listened to the life expectancy that my parents were told when I was diagnosed, i should have been gone 7 years ago. Treatments have sure come a long way since then and there are so many more options and effective treatments available that really help to improve things. I am now on the lung transplant list, which is something i was never even aware of ten years ago. Now the hope of a much increased quality of life after the transplant has me really excited and far more motivated to keep on fighting.

Lauren said...

Thanks Todd. I hope your fight doesn't exhaust you and that you'll get your transplant soon! Thanks for checking my blog. I appreciate your thoughtful comments too. They really add a lot.