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  1. Replies
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    Congrats Amber. Enjoy life. Best wishes.

    Congrats Amber. Enjoy life. Best wishes.
  2. How to find out classifications for Mutation D36N.

    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...
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    Cysteamine and CF

    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...
  4. Can you also please send it to...

    Can you also please send it to [email protected] sounds interesting
  5. Thread: Broncoscopy

    by Mallika
    Replies
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    760

    Aboveallislove and Ladybird thanks for wise words...

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

    by Mallika
    Replies
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    Broncoscopy

    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...
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    Hi Ricky , I did not check this message earlier....

    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...
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    Hi Anand , Since you say your son's Sweat is...

    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 ....
  9. Hi Tania, Scientists are still taking baby steps...

    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...
  10. Thread: lyovex?

    by Mallika
    Replies
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    Hi Cam, I had quick chat with Novabiotics ,...

    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...
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    Thanks Chris, this is just the thing I need.

    Thanks Chris, this is just the thing I need.
  12. Hi Jyoti, Can not tell you how excited I am to...

    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...
  13. I still have hopes. A comment for the article :...

    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...
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    Dependency on oxygen

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

    Oops calculated it wrong . It's working out to 6000$
  16. Haritaki is an dried indian fruit. Kinda bitter...

    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...
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    Am mother of 3 yr old with DDf508 from India....

    Am mother of 3 yr old with DDf508 from India. Doctor here suggested a vest and we are sourcing one from hill rom India . We here do not get dornase alfa so I guess vest is a good buy in a situation...
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    Postural drainage helps. There are few videos on...

    Postural drainage helps. There are few videos on YouTube about it.
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    . How is it. Any changes in mucos viscosity or...

    . How is it. Any changes in mucos viscosity or infection frequency. Any positive changes.... Please help me understand it.
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    Immunocal I guess is similar product. Has any one...

    Immunocal I guess is similar product. Has any one tried it on? How was it? I am trying to search for the best cysteine product. Any other products which help in glutathione generation...?

    ...
  21. Anyone who took respiratory scleratoma massages.

    Hi,


    Am mother of 3yrs old boy with double copy of df508. I am actively pursuing alternative medicine for my son. A naturopath I consulted suggested me about dr Kauffman's scleratoma techniques...
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    Hi , I just got to know about pulmozyme from...

    Hi ,

    I just got to know about pulmozyme from this thread. Am Mother of a CF baby boy of 3 years and from India where CF is considered rare and medication for it is extremely rare. Pray tell me...
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    Hi Kapil, I am trying naturopathy and this is...

    Hi Kapil, I am trying naturopathy and this is certainly better than other pathys. Heard there are good naturopaths in Delhi and that there is a institute in Simla. You should definitely try. Or give...
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    Hi Kapil, We are Parents of 2.8 yrs old baby...

    Hi Kapil,

    We are Parents of 2.8 yrs old baby boy with CF Mutation F508delta from Bangalore. Hope your Baby is doing fine.

    I guess CF in Indian Scenario is different. My son has frequent...
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