Are other members of your family tested for CF?

[harvey]

Having just found out that I and my sister are apparent carriers of
a recessive CF gene, how prevalent is it that other members of ones
family are tested?  I'm encouraging my children to have
genetic tests, as well as my other siblings. Some are more
interested than others but perhaps it's just because of the shock
of finding this "thing" cropping up in the family and
partly finances.  What's your experience?  It would
seem very unwise to not be tested it would seem to me.  <br>
<br>
Thanks,<br>
<br>
Harvey

 

[Momtana]

hi, Harvey. Upon my diagnosis (2003 at age 50) I gathered all of the information for my sisters and brother (3 or whom have children) but no one has pursued testing. My sister's doctor cautioned her about having this information in a medical chart to protect future insurability (health, life). I would be interested in others' opinions about that. This doctor did say she could go to a lab for testing - presumably without the md referral. My three children were all tested through Ambry genetics.

 

[JazzysMom]

None of my siblings have been tested. It seems some of my nieces/nephews are curious & might, but to date no one has. I did have a cousin whose child was tested for CF itself via sweat test, but that came back negative. Thats the closest in my family! I feel its a good piece of info to have like knowing your blood type & other family medical history!

BTW I am referring to being carriers of the gene. I am the only one with CF because I am the only one from MY mom & dad. Both parents were previuously married & had my siblings!

 

[Ratatosk]

I don't believe anyone in our family has gotten tested. Our siblings are done having kids -- we were off to a late start and waited until we were in our late 30s. I know my MIL thought she and her husband should get tested to find out "where the gene came from" but kind of a moot point. Wasn't a family history on either side of the family prior to this -- we've checked wayyyy back in the geneology records for any children dying. Nothing. Liza

 

[chantelfox]

I was diagnosed at 2 months. After that my parents tested my 3
brothers and only one of them is a carrier. I am the only one with
CF and there is no history of CF in my family that we know of.
 I think its a good idea to know if you are a
carrier, but I understand people who don't want it on their
record for insurance purposes. If your siblings have already had as
many children as they are going to have then it might not be of any
use to find out now.  As for you're children it might be a
good idea to at least get their children checked. I think it may be
the most important to do  it as a child, so that if a child
has CF you can begin treatment or monitor the disease. Yes, it can
be a huge burden on finances and a shock. My parents went through
it all. But I feel fortunate that they found out as early as they
did and decided to be proactive. I don't think I would be as well
off healthwise as I am if they didn't accept it and decide to
do something about it.

 

[julie]

Mark's brother and sister in law were tested when she was pregnant with their first son. Neither of them are carriers of a common CF mutation (Mark is a Double Delta F508), which means his brother is in the clear but his wife still could be a carrier of a rare mutation.

We will be doing a sweat test on our children shortly after birth. I've been tested by an extended panel to make sure I am not a carrier, but mutations exist that they haven't even identified yet so we want to be sure. The earlier one gets treatment, the better off they are in the long run.

I agree with you, it seems unwise to me too not to be tested, especially when the family history is there. The problem is many are either in denial, or don't completely understand HOW CF works and is passed down.

 

[harvey]

I hadn't thought of the insurance implications....  That's
scary. So perhaps some are waiting until later because of this?<br>
<br>
Harvey

 

[Alyssa]

Yes, getting life insurance and sometimes health insurance after a dx of cf can be a problem -- that was one of the considerations for us when we were deciding if we should test our son or not -- ultimately I figured it was better to know the truth -- there they were -- same two stink'n genes our daughter has!

 

[DietRootBeer]

Hello,

When my husband and I found out we were carriers many family members got tested....my uncle however lived in a small town and explained all of this to his physician and they rushed him for a sweat test...by mistake. He thought he was just seing if he had the gene...not CF! They called him in later and were happy to announce that he indeed did not have CF?!? We all had a really good laugh at that. He is like in his forties..totally over weight...smoker,drinker....I know some are diagnosed later in life. It is just that the staff were so incompetent that they sent him for a sweat test instead of a DNA test.

Anyway....we had a good laugh about it!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

I had this conversation with my wife the other day.  We also
had the idea that there might be a problem with insurance company s
later if our extended family members  got tested.
 We came up with having our family's spouses tested and if
they are negative than no harm done, but if they are
positive than it would be worth checking out because we
already know that the gene is running around in our side.  <img src="i/expressions/face-icon-small-smile.gif" border="0">
 Just a thought we had.