Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Deb, keep working; it can save lives; it has in our family! Love, n CF in Familes I thought this was interesting. There is 7 kids in my family and with having 2 kids with CF I have been bugging my sibling to get test to see if they are gene carriers. Well one of my sister who is pregnant right now and due in Dec found out she is a carrier of CF she was totally surprise. I just found out yesterday that my youngest sister is also a carrier of CF and is also pregnant. I really think my family though that I was the only one that was going to be a carrier. The two that found out they are were very surprise!!! Now I have to work on the others to get tested. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Isn't interesting how our siblings are supportive, etc. but when the time comes for THEM to have children they suddenly want to LEARN about CF. I don't think my siblings appreciate whats involved cause 2 have healthy wonderful kids and 2 are w/o children and not tested! ignorance is bliss. Rosemary in NY with 3 children (13, 10.11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Hi , I am sooooo glad the bit the bullet & got tested. Have their spouses? It would help them so very much to know ahead, either YAY or NAY.......I sure any hoping , wishing they will . It also will ease their mind if it is not CF .....BUT, if it has CF , they can prepare themselves & learn about all ..That way some things wont scare them to pieces & on the other hand, they will know what is REALLY bad , how to care for & what IS known by the medical world to help them & ease that portion of their load. All in all , everyone will be better off. Bless you for encouraging them. I am rooting for them . & all your precious family. Keep us posted:) LOVE & HUGS, grandmomBEV CF in Familes I thought this was interesting. There is 7 kids in my family and with having 2 kids with CF I have been bugging my sibling to get test to see if they are gene carriers. Well one of my sister who is pregnant right now and due in Dec found out she is a carrier of CF she was totally surprise. I just found out yesterday that my youngest sister is also a carrier of CF and is also pregnant. I really think my family though that I was the only one that was going to be a carrier. The two that found out they are were very surprise!!! Now I have to work on the others to get tested. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Hi Deb, Your information struck me as similar to my family situation. I am the youngest of 7, and myself and my middle sister are the ones with CF. So the odds worked out perfectly. My parents never knew they were carriers. We are both much older than those tests are. ( 40 and 49). My parents have said over and over, they would of had us, had they known what we were going to acquire genetically. We don't seem to have any history of CF in our family before my sister and I arrived, but then again, maybe no 2 gene carriers met up until my parents. Although, there is some suspicion that on my mothers side there may of been a couple of CF babies, as we have 3 babies who died early on from pneumonia type of issues. All my aunts and uncles and their kids do not have CF. So hoping that the CF gene match up was just in our family. Now to my family and testing for CF. My sister who is 49 with CF, has 4 children, none with CF. No, her husband was not tested for being a carrier. I am not sure when that testing became available, but her kids are 23, 21, 16, 14. My other siblings who have children also never were tested. I think more of the expense than anything else. They were all well educated on the possibility of them having a CF child if their spouse was a carrier, so no denial going on there. But I have an idea that they also were well aware that my sister and I have done so well, that they felt that it was not a big concern. And they were aware of the fact that CF folks can be much worse than my sister and I. Well, now I am at the point where my nephews and nieces are marrying and again this topic is " hot " in our family. My siblings feel that they should get tested, so to see if they are even a carrier, rather than having their kids go through it, when they cannot afford it. In fact, my nephew is now an expectant dad. We learned on his wedding day that his wife had an aunt that died of CF!! So the chances could be there. I think they were wrongly advised by a doctor that they did not need to get tested... we felt differently, but they both said, while it would be " nice " to be prepared, that my parents not being prepared for our CF diagnosis was not the worst thing and they feel they are equipped to do the same if it arises. So I guess a lot of this is individually based on beliefs, thoughts, experiences. I know all my siblings look at my sister and I and feel that CF is a bad thing, that it also is a good thing, as we are close and very supportive of one another. My parents were great role models and did a great job in having everyone involved in our day to day care as kids and adults. Just sharing my personal experience. Joanne Schum > I thought this was interesting. There is 7 kids in my family and with > having > 2 kids with CF I have been bugging my sibling to get test to see if they are > > gene carriers. Well one of my sister who is pregnant right now and due in > Dec > found out she is a carrier of CF she was totally surprise. I just found out > yesterday that my youngest sister is also a carrier of CF and is also > pregnant. I > really think my family though that I was the only one that was going to be a > > carrier. The two that found out they are were very surprise!!! Now I have to > > work on the others to get tested. Deb A Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Just thinking about all the talk on the list about CF in families. I wonder how many of us are distantly (or not so distantly) related, without even knowing it. There are bound to be some connections among us ... especially those with like mutations. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2003 Report Share Posted November 1, 2003 By the time I had JC and learned he had cf, all my sibling had finished having their children, so none have gotten tested. JC only has three cousins and I have encouraged their parents to have them tested. The oldest is engaged and has all the info he needs to have the tests done he just hasn't done it yet. Hopefully he will go ahead and do it soon, so his fiance can get tested if he is a carrier. My husband and I both have a jillion cousins and cf hasn't show up anywhere else in the family yet. > I thought this was interesting. There is 7 kids in my family and with having > 2 kids with CF I have been bugging my sibling to get test to see if they are > gene carriers. Well one of my sister who is pregnant right now and due in Dec > found out she is a carrier of CF she was totally surprise. I just found out > yesterday that my youngest sister is also a carrier of CF and is also pregnant. I > really think my family though that I was the only one that was going to be a > carrier. The two that found out they are were very surprise!!! Now I have to > work on the others to get tested. Deb A > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2003 Report Share Posted November 2, 2003 My younger sister who is also pregnant just found out she is a carrier as well. Her husband came back negative. > > I thought this was interesting. There is 7 kids in my family and > with having > > 2 kids with CF I have been bugging my sibling to get test to see if > they are > > gene carriers. Well one of my sister who is pregnant right now and > due in Dec > > found out she is a carrier of CF she was totally surprise. I just > found out > > yesterday that my youngest sister is also a carrier of CF and is > also pregnant. I > > really think my family though that I was the only one that was > going to be a > > carrier. The two that found out they are were very surprise!!! Now > I have to > > work on the others to get tested. Deb A > > > > > > Quote Link to comment Share on other sites More sharing options...
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