Search results

I'm being transfered to El Paso Tx, I have a daughter with Cystic Fibrosis, And I need to know if this will be a right move for her, Any good hospitalin the area?, Climate wise will this be a good move, She is 9 years old and we currently live in Louisville KY.

This is just depressing. I don't even know if my insurance will be able to cover this drug. Check out this paragraph from an article I just read at <a target=_blank class=ftalternatingbarlinklarge...

New wonder drug for genetic conditions could be on the market by 2010 16 September 2008 RESEARCHERS in the States hope a new drug which would revolutionise the treatment of genetic disorders such as muscular dystrophy and haemophilia will be available within two years. Early trials into PTC...

My six years old daughter keep saying that she does not want to have CF anymore. I just don't know how to respond to this. I'm assuming most of you (parents)had experienced similar issues. My question is How did you handle it?

Do any of you know where to find the ranking of CF centers in USA? I believe Minnesota is currently #1 where The median survival age has increased from 2 1/2 to 47 years old. I need to know where Milwaukee, WI and Louisville, Ky are ranking.

My daughter just had a CT scan done last week and the results showed that her lungs are in excellent conditions, but her sinus is very bad. I always thought that sinus is associated with headaches, bad cough, running nose, bad breath etc.... She doesn't show any of these symptoms but her doctor...

Need your opinion about Pulmozyme. My daughter is 6 years old FEV1 in the the high 90's. Two years ago she tested positive to pseudonomas. Used tobi for almost a year. Pseudonomas seems to be gone now. Doctor wants to be proactive and start her with pulmozyme. She coughs a bit especially at night.

Good news for those of you with nonsense mutations or Stop mutations or X ending mutations.(Different names same mutations) Here is the link from the phase 2 results of PTC124 in patients with CF. http://ptcbio.org/4.1_news.aspx#PR10052007