Can male carriers have an absence of the vas deferens?

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anonymous

New member
Hey guys!
My 3 month old son is a carrier of CF (we completed DNA testing about a month ago). He also scored negative on the sweat choloride test. I read somewhere that some male carriers can have an absence of the vas deferens? Is this true? Has anyone else heard this or read it somewhere? I hope what I read is wrong, so if you can help it would be great.
Thanks,
Lynsey -mom of Rhett 3mos. carrier, and Avery 22 mos. w/CF
 
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Dea

New member
I have not heard of this...only males with CF can have the absence of the vas deferens. Male carriers of CF can have kids...
If you have a child with CF...then your husband is a CF carrier...Hope this helps!
Dea
31 w/CF
 
A

anonymous

New member
when me and my husband got told we were carriers the doctor said that males who carry his gene are usualy infertial..........but he has had 2 kids
 
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anonymous

New member
I think you misunderstood the doctor. Since a child has to receive a CF gene from both the mom and the dad in order to inherit CF, it follows that most male carriers of the gene could not possibly be sterile.
 
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anonymous

New member
Lynsey, there ARE cases-it is EXTREMELY rare though where males who are carriers of CF genes (especially the common ones like Delta F 508) DO INDEED have absense of the vas Deferens. This is because although they DO NOT have CF and they have only that 1 CF mutation, some carriers are symptomatic. Why? The world of biology does not have an answer to that yet. Some CF carriers ARE symptomatic such as they have increased respiratory issues, tough time gaining weight, asthma... some carriers are symptomatic in the sense that they do have absense of the vas deferens.

Dea, some male CARRIERS of the CF gene CANNOT have children. Although it is very rare, it does happen occasionally.

Lynsey, I know its easier said than done, but I wouldn't worry about this for your son. There is a very very strong chance that he does have a vas deferens and WILL be able to father children nautrally. I know it's difficult to do that but there is no sense in getting all worked up over this because I don't even think it can be diagnosed in your son yet.

Take care,

Julie (wife to Mark 24 w/CF)
 
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Dea

New member
I just worded my response wrong...I didnt mean it couldnt happen....it's just not likely that a male carrier of CF wouldnt have the vas deferens.
Dea
 
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tigger

New member
what is that because im not quite sure. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Tigger, the vas deferens is a tube that carries sperm from the testicles where it is produced in the epididymis. The vas deferens goes all the way out through the penis and is what the man ejaculates sperm from. Many males with CF have absense of the vas deferens (refered to as CBAVD or CAVD-congenital bilateral absense of the vas deferens, or congential absense of the vas deferens) and in some males it is partially developed or clogged. Therefore, a lot of men with CF cannot have children naturally. There are other ways of a man with CF having a biological child but they do require surgical procedures. Let us know if you have more questions, this can be quite complicated.

Julie (wife to mark 24 w/CF)
 
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anonymous

New member
I am new to this site and am here becuase after trying to conceive for a year and a half, my husband and I underwent the necessary medical work ups. The doctor discovered that my husband is missing his vas deferens, and although the genetic testing results are not back yet, the doctor is pretty sure he is suffering from a mutation of cf. Yes, this has been devastating for us. It is extremely rare...only 1% of male infertility is due to this. We are both concerned about his health as well as now having to undergo IVF and ICSI in order to reproduce. We are starting the process now, but planning to actually do the first cycle in April so that we can have time to get monies in order! I just thought I should post this since this topic does not have much information/experiences posted...hopefully because not many have to go through this! The one positive in all of this is that through IVF, we will be able to do genetic testing to each embryo and have the option of taking out all the cf as well as carrier embryos so as not to pass it on at all.
 
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anonymous

New member
What procedures CAN be done in order to have natural children? Of course we have awhile but it is ALWAYS on my mind. Reece is only 3 w/ CF mutation delta f508 (2x)
Leah ~ mommy 2 Reece
 
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JazzysMom

New member
For further info on both of your questions I would suggest you look at this link. In addition to Julie & Marks part, there is a link to HollyCatheryn's & I think they both answer most of the ??? you have. Good Luck!


<a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com
">http://www.cysticfibrosismaleinfertility.com
</a>
 
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julie

New member
Thanks Melissa for posting the site in my absence. Leah, if you visit the site and have any questions, please feel free to email me at division902@hotmail.com or cystic_fibrosis_male_infertility@yahoo.com

To the anonymous poster today (28th), thank you for sharing your story with us, it is very rare but there are cases of a carrier having CBAVD. If you and your husband were ever interested in sharing your story on my website (you can remain annonymous or post as much information as you wish), I would welcome the information. I am always searching for CF or CF carrier IVF success stories to put on my site, to inspire others that there is hope and that "CF" families are doing this all of the time. If you are at all interested (and if not I understand) please email me at either of the addresses above.

Additionally, I feel I have to mention this for the record... in some cases, men are found to have CBAVD and it is completely shocking to them. They have never been diagnosed with CF, there is no family history of CF and as part of the infertility work up, they have genetic testing for CF done. On a number of occasions, these men HAVE CF (some are JUST CARRIERS) and their infertility is the ONLY symptom they have of CF. We all know that CF affects everyone differently, even siblings with the same mutations. The same goes for this situation, some have no lung or digestive involvement and ONLY have infertility complications. I don't mean to scare the anonymous poster, but prepare yourselves for more than just a CF carrier diagnosis, just in case.
 
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julie

New member
last poster, out of curiosity, is CBAVD the only CF "trait" you have or do you also have lung and or digestive involvement? Just curious...
 
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MOME2RT

New member
How can CF be NOT found until late in age?? Did any of you have symptoms looking back? Just very curious, w/ my husband & I infertilty problems & when we DO get pregnant, Reece has CF!!!<img src="i/expressions/angel_ani.gif" border="0"> So of course we are at least carriers???!!!
Leah~mommy 2 Reece 3yrs old w/CF
 
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anonymous

New member
I am that poster above. I also have lung issues and digestive issues. I had them prior to diagnosis, but they were mild as a child and just got worse as I got older. Now I have severe lung disease. I was diagnosed a few years ago. I was misdiagnosed all my life because my case wasn't severe and other issues that I don't care to discuss (family issues). I was treated for asthma and pneumonia, etc. growing up and young adulthood. There are several people that I have come in contact with since my diagnosis that was diagnosed late in life like me. There is another person at my clinic that was diagnosed in late 20's. I carry two of the delta F508 genes.

male w/cf
 
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Alyssa

New member
my son was diagnosed with CF at age 17 with no previous symptoms. His genes are Delta F508 and R117H. The doctor said that those genes are usually associated with a lack of vas deferens. He has had no interest in finding out yet if they are there or not.

But to answer the Leah's question -- no, he didn't really have any symptoms for 17 years (not 30 years like the other poster) but still quite some time. He is now almost 20 years old and still not much in the way of any symptoms. He has been through every test the cf docs could think of to make sure everything is good.
 
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MOME2RT

New member
well hearing all of this makes me worry bout my husband a little, although Reece's dr. said not to since he did father Reece! What is the easiest way to get tested And where do yu go....PCP? Or just dont worry bout it since he has fatherd a child...........although it was difficult!!
Leah ~mommy 2 Reece w/CF
 
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