BleedOrange1968
New member
I have F508 and 3272-26A>G Anyone else like me???
Got dx 24...am 44 now....usually do pretty well but winter months get me Darryl
Got dx 24...am 44 now....usually do pretty well but winter months get me Darryl
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Genotype
- Thread starter BleedOrange1968
- Start date
BleedOrange1968
New member
I have F508 and 3272-26A>G Anyone else like me???
Got dx 24...am 44 now....usually do pretty well but winter months get me Darryl
Got dx 24...am 44 now....usually do pretty well but winter months get me Darryl
lilmac1177
New member
i was diagnosed at birth but just now found out thru my records what my genotype is: F508 and 3659 delC??? i wish i knew what that meant LOL
lilmac1177
New member
i was diagnosed at birth but just now found out thru my records what my genotype is: F508 and 3659 delC??? i wish i knew what that meant LOL
BleedOrange1968
New member
Never heard of that one on the end. Just bought me a pulse oximeter to keep up w my oxygen. I'm engaged to be married to an awesome girl!! She has a little boy. He loves me alot and I him. Nice to talk w you
BleedOrange1968
New member
Never heard of that one on the end. Just bought me a pulse oximeter to keep up w my oxygen. I'm engaged to be married to an awesome girl!! She has a little boy. He loves me alot and I him. Nice to talk w you
bananagirl
New member
I too have the F508 I also have N1303K
bananagirl
New member
I too have the F508 I also have N1303K
A
Allansarmy
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rtatozer</b></i> We recently found out that no one seems to know my daughter's genotype even though she was diagnosed 18 years ago. Nothing in her files! We are now fighting the insurance company to have the genetic testing competed. Anyone else had this problem?</end quote>
Hello there rtatozer. My son just like your daughter was not genotyped either. He is 15 years old and I was told it was unneccary to Geno type back then. Now with the new drug coming out, I truely want to know if my son is in the 4% that the drug will help. So I called my CF clinic here in Dallas, Texas.
The CF nurse was very excited to tell me that they have a grant from the Cystic Fibrosis Foundation to authorize CFF MAP DNA testing. Call your CF clinic and as them if they can submit your daughter. The form is called this exactly "CFF MAP Enrollment Form DNA Diagnostic Lab at Johns Hopkins". I am awaiting approval now (takes 2 weeks). The nurse was confident that we could get this approved and all we have to pay for is the actual blood draw fee (like $25 bucks or so).
My insurance never covered Geno type testing, thats why we kept putting it off. But now..... Very excited and nervous at the same time.
Hello there rtatozer. My son just like your daughter was not genotyped either. He is 15 years old and I was told it was unneccary to Geno type back then. Now with the new drug coming out, I truely want to know if my son is in the 4% that the drug will help. So I called my CF clinic here in Dallas, Texas.
The CF nurse was very excited to tell me that they have a grant from the Cystic Fibrosis Foundation to authorize CFF MAP DNA testing. Call your CF clinic and as them if they can submit your daughter. The form is called this exactly "CFF MAP Enrollment Form DNA Diagnostic Lab at Johns Hopkins". I am awaiting approval now (takes 2 weeks). The nurse was confident that we could get this approved and all we have to pay for is the actual blood draw fee (like $25 bucks or so).
My insurance never covered Geno type testing, thats why we kept putting it off. But now..... Very excited and nervous at the same time.
A
Allansarmy
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rtatozer</b></i> We recently found out that no one seems to know my daughter's genotype even though she was diagnosed 18 years ago. Nothing in her files! We are now fighting the insurance company to have the genetic testing competed. Anyone else had this problem?</end quote>
Hello there rtatozer. My son just like your daughter was not genotyped either. He is 15 years old and I was told it was unneccary to Geno type back then. Now with the new drug coming out, I truely want to know if my son is in the 4% that the drug will help. So I called my CF clinic here in Dallas, Texas.
The CF nurse was very excited to tell me that they have a grant from the Cystic Fibrosis Foundation to authorize CFF MAP DNA testing. Call your CF clinic and as them if they can submit your daughter. The form is called this exactly "CFF MAP Enrollment Form DNA Diagnostic Lab at Johns Hopkins". I am awaiting approval now (takes 2 weeks). The nurse was confident that we could get this approved and all we have to pay for is the actual blood draw fee (like $25 bucks or so).
My insurance never covered Geno type testing, thats why we kept putting it off. But now..... Very excited and nervous at the same time.
Hello there rtatozer. My son just like your daughter was not genotyped either. He is 15 years old and I was told it was unneccary to Geno type back then. Now with the new drug coming out, I truely want to know if my son is in the 4% that the drug will help. So I called my CF clinic here in Dallas, Texas.
The CF nurse was very excited to tell me that they have a grant from the Cystic Fibrosis Foundation to authorize CFF MAP DNA testing. Call your CF clinic and as them if they can submit your daughter. The form is called this exactly "CFF MAP Enrollment Form DNA Diagnostic Lab at Johns Hopkins". I am awaiting approval now (takes 2 weeks). The nurse was confident that we could get this approved and all we have to pay for is the actual blood draw fee (like $25 bucks or so).
My insurance never covered Geno type testing, thats why we kept putting it off. But now..... Very excited and nervous at the same time.
S
Swallowtail66
Guest
To look at your situation on the positive side....the gene mapping has only been readily available around 9 years. 14 years ago when my child was 99% CF due to a birth defect and then just looked too healthy, and her then 7 year old sister just had irritating digestive and lung issues, we were told they were just carriers by the screener of the time. It took 6 years to be offered the gene mapping to allow the decision to treat my girls. Blessings to the doctor/clinic that treated your child's symptoms without definitive DNA evidence. That takes courage in today's "prove it" society. Be prepared that the DNA may not be as conclusive as you would wish. I had to have a geneticist agree with our CF center to continue to treat me after my DNA came back wishy washy! He said where there was smoke there was fire...Blessings to him too!
S
Swallowtail66
Guest
To look at your situation on the positive side....the gene mapping has only been readily available around 9 years. 14 years ago when my child was 99% CF due to a birth defect and then just looked too healthy, and her then 7 year old sister just had irritating digestive and lung issues, we were told they were just carriers by the screener of the time. It took 6 years to be offered the gene mapping to allow the decision to treat my girls. Blessings to the doctor/clinic that treated your child's symptoms without definitive DNA evidence. That takes courage in today's "prove it" society. Be prepared that the DNA may not be as conclusive as you would wish. I had to have a geneticist agree with our CF center to continue to treat me after my DNA came back wishy washy! He said where there was smoke there was fire...Blessings to him too!