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Genetic Mutation? (Post it here)

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Cystic Fibrosis
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Posted 9/20/2005 10:16 AM (GMT 0)

Hi Everyone,

I am a parent of twins with CF and would like to have sort of a sound off to find out the different mutations and how the symptoms affect you...mild, moderate, severe, or almost non-existant...and your age please.  Parents, please sound off as well about your children.

My boys have the genetic mutation:  Delta F508.  Right now they are 9 yrs old and have mild symptoms.

Posted 9/21/2005 3:31 AM (GMT 0)
My daughter also has the Delta F508 mutation.  She is 8 years old, was just diagnosed and seems to have mild symptoms.  We just got back from the Dr. today and he says that this is the most common mutation.  He told us people with this mutation can have mild to severe symptoms so there are other factors out there that effect the severity that they have not discovered yet.

Posted 9/21/2005 6:23 AM (GMT 0)
hello everyone... names olivia im 18 with c.f and my brohter is 20 with c.f. we were diagnosed in june 2000 and we both have the delt f 508.. my broiter has sinusis.... not to sure how to spell it... while i have more of the lung problems and stomahce problems....when i was first diagnosed my pfts where in the lower 70's. i now am at 98%..... i always have to talke enyzems to eat.


olivia
Posted 10/24/2005 7:23 PM (GMT 0)
My 4 month old was diagnosed with CF this morning he has D1154N and F508.  I know nothing of the D1154N so I would like to know more.  I posted at a separate topic on this.  Right now he is asymptomatic. He was screened at birth as mandarory by MA regulations and that is the only reason we found out.  His sweat tests are borderline.  He has a normal fecal elastase test result.  Does that mean he will have mild/no bowel issues?
Posted 11/24/2005 7:36 AM (GMT 0)
I have the deltaF508. that is the most common mutation, while I have sever symptoms I treat very agresavely, I spend an hour every day doing treatments and breath in some of the most descusting things. I am in the hospital every 2-4 months for 2 weeks at a time. my oxygen level drops when I sleep so I use oxygen at night. I also take enzymes when I eat. he enzymes are not enough for me to gain waite, I had sever falure to thrive when I was young I am only for foot nine, and weigh 83 pounds, I have a g tube that I am feed through all night long. I am now 18 and I concider myself to be doing well. I holding high PFT's (my basline is 86, I go into the hospital around 70) and going to collage.
it is important for you to remember that the sevarity of the symptoms has nothing to do with the mutation. they are not sure what causes different cf cases to progress differently, but they do know that there is no single thing that determins how sick somone will be. I have always been told that CF is like a snow flake, some seem to get better as they get older, and some just get sicker. some have no symptoms, and others are just smashed like me.
Posted 11/26/2005 8:04 AM (GMT 0)
Hello everyone. I have CF. I'm 24 years old and was diagnosed in 1981 at 4 months of age. I have severe problems. However I pride myself in having good lung function and keeping a positive attitude. Except when I'm sick. But even then I still try. :) I have the Delta F508 as well - THANK you Scottish Ancestors! And yes this is the common one. The only benefit to having the common variety is the likelyhood that a cure will be found and tested for it first (because it is so common!).

It is my personal opinion that how you do in later life has alot to do with how you were managed as a child (physio daily, meds on time, aggressive treatment of any problems, and isolation from other sick people).
I have noticed a very strong co-relation between the cystics who are deathly sick and passing away at young ages with cystics who go to (went to) those terrible CF camps. Good idea, but bad practice (what better way to swap lung buddies than to share a cabin!). Also getting close to other cystics in real life is another no-no. Thankfully I do not have other cystics in the family or I am sure I would be alot sicker than I am. I try and stay 5 feet away from any other cystics. Thusfar its kept me relatively healthy.

Keep smiling!

Post Edited (Tayra) : 11/26/2005 1:09:09 AM (GMT-7)

Posted 1/14/2006 4:48 AM (GMT 0)

hi my name is patricia. i am 22 yrs old and i have just recently been diagnoised with cf. i have the same mutation my sister did and that is delta f 508 and there was another one i cant remember tho. i dont have a mild case but i dont have severe either. i cant eat ne thing right now without puking. the docs r tryin to find the right emyze(i cant spell it) to go along with reglan and zantac and they r talking about a g tube as well. im not allow to work more than 2 days a week for i get to weak and i get frequent lung infection and stomach infections i have a bowel movement only once a week. im still trying to grasp the whole concept of cf at 22 yrs old.

thansk

faithful

Posted 1/20/2006 10:54 PM (GMT 0)
I've lived with CF all my life, I'm now 42. I recently found out that there was different stains. I dont know what mine is. I am now 2 1/2 years post transplant, and doing great
Posted 1/22/2006 2:14 AM (GMT 0)
Most Excellent! to hear Robertson.
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