Cystic fibrosis
Do you know haw many people suffer from CF on a worldwide scale. Thank you for your help
Cystic Fibrosis
Does anyone know if the salt air purifer by salin works well for a cf patient?
Sinus Problems
I am 19 and have had many sinus surgeries...each time I get sick is due to the post-nasal drip into my lungs causing them to get inflamed and irritated. For the past couple years my sinuses have started bleeding, mostly at night to the point where I will wake up choking on the heavy drainage it causes to my lungs. I was wondering what I should do? Surgery hasn't helped, are there any holistic avenues such as eating certain foods?
Scandi Shake, AquaAdek's vitamins - where to buy?
Hi, I'd like to buy Scandi Shake and AquaAdek's vitamins. I'm looking for a company which sells these drugs on line and could ship them to Poland. Thanks for your reply, Annette
Air humidifiers for the home
My baby (4 months old) has been diagnosed with CF. I'm wondering whether we should get a humidifier for his room to a) clear the air and b) increase the moisture in the air which may help his this worthwhile? Do you have a point of view on getting an air purifier / filter versus getting a humidifier?
I am from Kosovo.I have a daughter with CF 5 months old. She was born with MI,and had her first surgery at two days old,and had ileostoma. Second surgery was done after 4 months but there where some complications so she was operated two more times,So she had three surgeries within ten days,and now she has again ileostoma but not at the end of the small intestine. Now she is 5 months,she takes all the therpy for CF(enzymes,antibiotic,adek-s,donperidon....)but she is dehidrating too much.Someone suggested me the refeeds into the stoma,but our doctor still didn't mentioned it. So what do you think for refeeds? I am interested to go somewhere abroad for se next surgery,but I don't know where to go.
Bugs !!
My 16 yr old son has CF. He has been growing Micobacterium Abscessus for a couple of years and is on intensive eradication therapy (Amikacin nebs, Clarithromycin) He recently also grew Scedosporius - and has now cultured Pseudomonas (again) so is on eradication therapy (Colomycin Neb & Cipro Orally) - but he has been taken off the Amikacin due to the toxicity of using both together. He is relatively well apart from a cough. Does anyone have any comments on the implications of him growing all these bugs together ?? I want to know what to expect and am quite worried. We are lucky to have a fantastic team at our CF Clinic.
CF Twin babies
Hi, I have a case of CF in the family. These twin girls were diagnosed right after birth, and have had a rough first 6 months. The parents are a bit disappointed at the very sparse specialized care available in the country and are starting to consider getting the girls to some other country with a better health network. Is it possible for them to use the medical facilities in another EU country, and under which conditions would they be allowed to do that? Hope you can help. Thank you very much. Jose
Mycobacterium abscessus
Hi, My daughter is 13 years old, recently she has Mycobaterium abscessus and her PFT drop drameticly from 111% to 66% - 62% and now she only have 52%. Does anyone have already experience in this field??? She is on Amukin and Biclar treatment.
Called for a retest
My baby had the heel prick test and has been called for a retest. I am going out of my mind with worry. Does this mean they have identified the defective gene? Does every suffered diagnosed always get called for the dreaded retest?
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