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Congrats Amber. Enjoy life. Best wishes.

Can someone please help me understand how to find out classification for a particular mutation. Some one I know has D36N which looks like a rare mis sense mutation. But want to know what class this belongs to and if Kalydeco off label works for this. Any help appreciated.

From the day I read about the research by Dundee university, I could not resist to look into this Cysteamine. And very interestingly there are about half a dozen research papers out about Cysteamine and CF. From the research papers I read, Cysteamine seems to be a mucolytic, something which...

Can you also please send it to nava_mallika@yahoo.co.in. sounds interesting

Aboveallislove and Ladybird thanks for wise words and for filling strength in me. Then may be we'll get that Bronco done.

My DS is getting fever frequently offlate and Sputum culture says there no growth what soever. His ped pulmonologist is suggesting a broncoscopy. Somehow we are not comfortable with the idea. We have never used pulmozyme before but want to use it before going for broncoscopy. I understand it...

Hi Ricky , I did not check this message earlier. A private message would have caught my attention straight away. Anyways how is your niece now. Best place for treatment is with Dr Kabra in Aiims Delhi. He is the one who told the world that CF did not spare India and if properly diagnoised one...

Hi Anand , Since you say your son's Sweat is salty, I can not help but think of CF. I am sorry. It 's good to get him tested for cf to rule it out. Please contact Manipal Hospital Airport road . They have the sweat test facility( It doesn't come out properly through). There in the genetics...

Hi Tania, Scientists are still taking baby steps on this subject. Good news is that they have found that lung epithilium cells can be made of Hematopoetic stem cells available in Cord blood. But the in the procedure to actually convert the Hematopoetic stem cells into Lung epithilium cells...

Hi Cam, I had quick chat with Novabiotics , makers of Lynovex. here,s how they responded to my questions on Lynovex. Q1: How long might this take to hit the market. Subject to positive clinical development, likely 2017. Q2: How do you plan market this drug in countries like India. As yet, we...

Hi Chris, Good news. would love to bid bye to antibiotics. Btw here's some info shared by novabiotics. Q1: How long might this take to hit the market. Subject to positive clinical development, likely 2017. Q2: How do you plan to market this drug in countries like India. As yet, we are not...

Hi Chris, this is great news. Is this yet another antibiotic to which bacteria can grow resistant to or is it a drug which indirectly kills the bacteria by destroying their food/habitat... Second one sounds more promising. any idea what this is. I looked into their webite but did not met info on...

Very Informative . Thanks Chris.

Thanks Chris, this is just the thing I need.

Would that mean, this only works for people who's stem cells(umblical chord) is stored during their birth? Any information on this if you know.. Anyway Amazing blog

Hi Jyoti, Can not tell you how excited I am to talk to an other woman on this problem. The others parents I know in India are Kapil and Rahul fathers of CFers who are also on this forum. Yes I am from Bangalore. My Son is better now. Even I regularly go through this forum. I also visit vertex...

I still have hopes. A comment for the article : http://www.fiercebiotech.com/story/b...#ixzz351DAWSNo reads that even Kalydeco had similar negative reviews when it came out. But look at the wonders it is doing. So hoping that it is the same with the Lumacaftor and Kalydeco also. Now waiting for...

Hi All, my 3 year old had very severe pneumonia ( had 3/4 of his lungs out of order) and is hospitalised on April 2nd. his pneumonia has subsided but his dependency on oxygen is alarming. His saturation point O2 is dropping down to 70's and further down. He's on oxygen 5 liters of oxygen. Is...

Oops calculated it wrong . It's working out to 6000$

Haritaki is an dried indian fruit. Kinda bitter in taste , but is administered to infants. Quite safe. I've had it so many times. One can procure it from http://www.evaidyaji.com/Ayurvedic/Ayurvedic%20Herbs/Haritaki or ayurvedabay.com it is available in powder form and tablets. Not sure how...