Search results

  1. A

    My son has this combination: 3849+10kbC and 712-G->T

    Hi, my daughter is 10 and has the same first mutation as your son. She is doping well, never was hospitalized. She is strong on sports and oferty much a normal kid going to publicznych school.we are from Poland.
  2. A

    Unbelievable 504 mtg at school

    You should chnge teacher or even school - she will never understand unless you take her too a hospital with you - I mean the teacher - but then she will be overprotective to your child. This teacher is dicrimanting your child and she will never be able to go in the middle and listen to you or...
  3. A

    Advice needed

    There are CFTR subsidiary disease which means your child can have some to milder symtoms or primary ciliary dyskinesia. Lack of pneuminia or not needed ezyms are not an argument. My Daughter is 9 and has never needed enzymes as well as has never been hospitlized or had pneumonia. I have no idea...
  4. A

    Making dreams come trud despite "healthy" people

    Thank all. Amber - I know it was hard for you too. Warm hugs. Automn - I had to tell Asia the truth - otherwise she was beging to think she had no talent and wanted to quit everything. it's this age when tellin the truth is better then saying nothing. It made her get over it and start workin...
  5. A

    Making dreams come trud despite "healthy" people

    Having cf means often fighting against prejudice od "healthy" people and institutions. Asia passed the exams to our national ballet school (was told by her teacher privately) but after opening her papers she was rejected in a very rude way. But there are other ways od gaining a balerina...
  6. A

    Anyone with Mutation 3849+10kbC-T

    my daughter has this mutation along witha second. This muation is strong - meaning it will dominate the course of your husbands health and it is considreed to give a mild cf. My daughter is so far healthy as any kid. But my husband is a carrier of this mutation and has no symtoms at all - so am...
  7. A

    Other forms of treatment?

    we use Quacke and Acapella along with active breathing and puffs - but we're leanning - we mix thhe technics - hand clappinga, breathing and huffs then quacke....and also alot of sports
  8. A

    26, just diagnosed, advice/input/kind words welcome.

    hi, it happens in EU also. Many people have a late diagnosis. However the sweat test indicate it's still an open matter wether you do or not have cf. There are also cftr related symptooms, mild forms of cf you might say and also some peopple go on for years with some mutations with a working...
  9. A

    question on mutatuon

    ok - the cftr gene (as all :) ) is actually two little parts - each from one parent. You do not know which one is from who unless you do test . the same goes on fron your parents and so on...but the other half of the cftr gene is normal - that means you have no symptoms therefor you have no cf...
  10. A

    Does breathing with your nose vs mouth strengthen lungs?

    Your sinuses are what protects your lower airways and lungs from germs and bugs...durring exercise - cause it's a way to learn to conrol your breath and slow it down
  11. A

    New type of antbiotic
  12. A

    Share your tips to improve day-to-day life!

    - we use a simple clander to mark all the treatments and meds during the month and cross each day when done - just hanging on the fridge, then no matter who's taking care of Asia and if we have or not an electricy shut down (happens alot) - we know what and when to take - takes about 5 minutes...
  13. A

    Worry over runny nose?

    I would consider sinus rinses - then you'll know if it's just clear or something more...we are recommended to see a goog sinus doc who know cf on regular bases - maybe you have one as part of you cf team
  14. A

    Sinuses and 3% NaCl rinses

    Sinuses and 3% NaCl rinses - have any of you tried this - we did and works much better.. But I guess it's not for those who do not tolerate hipersalt inhalations
  15. A

    update from Scotland

    :D wonderful adventure
  16. A

    new moms with cf newborns

    handle it step by step and live every moment to the fullest... make dreams and make them come dauhgter is 7 - tommorroe :) she dances in a muscial school , performs and is trying out to get to the ntaional balet school.. This may not be your childs dream - but yiou'll have others. The...
  17. A

    Asia Musical Academy in NY
  18. A

    Asia Musical Academy in NY

    So Asia is still living her big dream - she gave a wonderfull performace yesterday as a lost girl from a rock and roll version of the musical Peter Pan in Viva la Mamma. 450 kids and about 30 adult musical performers from one of best Europs muscial thearters - Roma. And she want more next year:)...
  19. A

    Asia Musical Academy in NY

    Today, Poland and also Warsaw are celebrating 25 years of freedom. There will be a big celegration before the Warsaw Old City Royal Castle - The muscial Academy which Asia is part of - will also perform. Only a small group of older kids was asked to perform - but still - it's a big honor...
  20. A

    Asia Musical Academy in NY anybody can come - please welcome - it's a show - full scale musicla, over 450 kids and adults