CF carriers

[anonymous]

Similar to the post on if someone was the only one in their family who HAS CF, I am wondering about carriers. We found out through prenatal testing that I carry CF and my husband (through Ambry) has a novel mutation. I am from a HUGE family (interestingly enough, the mutation I carry is specific to Georgian Jews, a small Russian province) and we have NEVER had any problems in our history (mother is one of 8, there are CADOODLES of cousins). My husband is also from a large family with NO history whatsoever.

Did many of you find out you were carriers with no evidence of the disease in your families? Both my husband and my family are 'skeptical' because of this (YES, we've given them information to read to no avail!)

T.D.

 

[anonymous]

I read that about 80% of those diagnosed with cf have no family history of the disease. We had ZERO idea that cf ran in my family as well when my daughter was diagnsoed. Both my mom and mother-in-law are into genealogy and can trace our family history way back without any evidence of early death due to cf. My dad was one of 6, grandmother one of 8 and I have 30 first cousins. Now 3 of the 4 grandkids have been diagnosed with cf on my husband's side in the last 3 years. It is sure showing up now.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf, aunt to Joseph, 7, with cf

 

[JazzysMom]

You will definitely see more diagnoses in America since the American Pediatric Association starting including CF with the Newborn screening. As well as the Obstetrician Associate now having to offer the CF testing when they offer others. This was not the way it was. usually they only did testing if there was a family of history of CF which made no sense since such a high % of diagnoses have no known family history.

 

[2sickkids]

Yeah the oh not my problem thinking. My family is that way. Both of my parents are one of ten kids. Two of my dads siblings died at birth though. 16 blood anuts and uncles most of which have 5 kids and most of my cousins have 4 kids. So in numbers alone we should get tested and have many carriers. Yes I know I have a very large family. I tend to think they prefer the ignore it side no one really wants to be around my kids. One cousin's nursing instructer heard them talking bout my kids and told them cf was no big deal it really causes no problems. Out of all my family only one has tested their child and was tested possitive and one is trying to get their's tested doctors keep saing no cause the father is not "white". That baby has been it the hospital at least once a month since birth and is smaller then my 10 mo cfer but is 2 months older.

 

[JazzysMom]

The one child who isnt being tested because the father isnt "white" should find another doctor or clinic to get tested at. My husband is black and I am white. My doctors tested him for CF & Sickle Cell & me for Sickle Cell. My daughter is a perfect example (bi racial) that the race should not dictate who gets tested because nowadays it means nothing.

 

[cfmomma]

my husband has several family members with CF, two aunts and two cousins. His niece`has all the symptoms of CF, but her mom refuses to test her. It really upsets me because she is twelve years old and has so many issues. She is very thin, despite her huge appetite, she has asthma and get bronchitis a lot, digestive problems etc... I have expressed my concerns to her mom and encouraged her to get tested (without being too pushy). She gets extremely defensive and says there is nothng wrong. It makes me wonder how many undiagnosed cases of CF there is.

 

[anonymous]

Hello
I agree the child should still be tested even if the father is not white, my husband is black and our daughter has CF, she has the DF508 and N1303k genes, also at our CF clinic they have pictures of many children and some of the kids are black

Kaitsmom

 

[2sickkids]

See that is what I think to it makes me mad. Very mad not ever considering the fact that the father is bi racial as well but because the poor little girl is being ignored for such a stupid reason and she has all the symptoms. All hospitalizations have been for infection failure to thrive and she has taken so many antibiotics that when she does get tested if she has it what are they going to treat her with. But they live in one of those tiny towns with a doctor that is like 300 yrs old and does everything cause he is the only doctor. I live in a huge town with doctor and hospitals everywhere and they would not test my oldest because there was no family history I had to take him to cf center for a 2nd op and I was more then mad that 2 days later he was no longer a chronic respitory failure to thrive but infact had cf something I had asked the other dr's about many times.

 

[NoDayButToday]

I agree the child should still be tested. I read a very interesting article in the Times a few monthds ago about this college course where students can get their DNA broken down into specifically where they came from and a detailed picture of their ancestry ( I am kind of wording this poorly), and some sutdents who classified themselves as "African American" and by all appearances were black and descnded from Africans, were in fact up to 48% 'white'. So even if the baby's father is black, it doesn't mean the baby doesn't have CF

 

[SeasonsOfLove]

In addition, while it's less common, it is possible for a black person to carry the CF gene!

Good luck,

 

[anonymous]

Absolutely it is possible to be found in the African American race! The Milan Foundation does so much for CF Research and also helps families with CF....the daughter (with CF) is African American and has CF. Although it isnt common, it still lives within the race.