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Re: CF in Familes

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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

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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 "

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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

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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/

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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

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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

>

>

>

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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

> >

> >

> >

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