Jewish Genetic Disease Testing.

sb9411 · March 2011

Hello! Is anyone/has anyone had Jewish Genetic Disease Testing?
We are going on April 3, and I'm nervous!!! Not sure what to expect, etc.

LBRM_NJ · March 2011

All they are going to do is draw some blood right now! Then, once the results are in, if there are any concerns, they will go over them with you.

Don't worry about it!

MrsMLRB · March 2011

My PM button isn't working so I will post here.

I was tested in December and found out I am a carrier for cystic fibrosis. I am obviously devastated but I am so glad that I know now. FI is getting tested on Monday so hopefully he won't be a carrier.

My family is stumped since we don't know anyone on either side who has cystic fibrosis.

Just realize the chances are that you won't be carriers for the same disease. And you are better off getting tested and knowing than finding out after the fact.

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:94755dac-2dfd-4a0c-8b1e-9d7b3983d6bd">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]My PM button isn't working so I will post here. I was tested in December and found out I am a carrier for cystic fibrosis. I am obviously devastated but I am so glad that I know now. FI is getting tested on Monday so hopefully he won't be a carrier. My family is stumped since we don't know anyone on either side who has cystic fibrosis. Just realize the chances are that you won't be carriers for the same disease. And you are better off getting tested and knowing than finding out after the fact.
Posted by MrsMLRB[/QUOTE]

That's so interesting, Mer. I guess that you can be a carrier even if it doesn't present in your family somehow. One of your parents is probably a carrier too, right? I'm sure your FI won't be a carrier for CF because the odds would be really slim, like you said.
I always torture myself thinking of the worst case scenario... but it's better to know. FI and I are both going (unfortunately it's on his bday!!!) but they are doing testing for $50 and they do a complete screen for all of the lovely genetic diseases. Fingers crossed.

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:6930ac90-07b0-4a51-be2f-f890a875fc6b">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]All they are going to do is draw some blood right now! Then, once the results are in, if there are any concerns, they will go over them with you. Don't worry about it!
Posted by LBRM_NJ[/QUOTE]

Thank you- and your baby is adorable!!!!!!!!!!!!!!!!

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:7f9f3f36-a284-4c91-a61a-9e121a145826">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : That's so interesting, Mer. I guess that you can be a carrier even if it doesn't present in your family somehow. One of your parents is probably a carrier too, right? I'm sure your FI won't be a carrier for CF because the odds would be really slim, like you said. I always torture myself thinking of the worst case scenario... but it's better to know. FI and I are both going (unfortunately it's on his bday!!!) but they are doing testing for $50 and they do a complete screen for all of the lovely genetic diseases. Fingers crossed.
Posted by sb9411[/QUOTE]

I also think about the worst case scenario. I actually cried right after the geneticist called. I just have to keep reminding myself that he only has a 1/29 chance of having it (and not reminding myself that I too only had a 1/29 chance in having it).

At least your screening is cheaper- in Chicago its $110 for the Jewish people.

I am sure you will be find- only 20% of Jews are carriers for any disease at all.

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:5cd5f08b-4f85-44ef-bb70-c2fbba77b281">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : I also think about the worst case scenario. I actually cried right after the geneticist called. I just have to keep reminding myself that he only has a 1/29 chance of having it (and not reminding myself that I too only had a 1/29 chance in having it). At least your screening is cheaper- in Chicago its $110 for the Jewish people. I am sure you will be find- only 20% of Jews are carriers for any disease at all.
Posted by MrsMLRB[/QUOTE]

They said it can be up to $3000.....WOW! I feel lucky to not have to pay a ton. I have this like insane fear that we will both be carriers for Tay Sachs (did a research paper on it in college and now it is one of my greatest fears for my future children) and then we'll have to think of different options as far as having children goes (if we are both carriers, we discussed that we wouldn't risk having biological children). I realize that it is not really rational, but whatever... it's stressful!

LBRM_NJ · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:603ce47a-6b27-45f2-a261-867ef33d7dcb">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : Thank you- and your baby is adorable!!!!!!!!!!!!!!!!
Posted by sb9411[/QUOTE]

Aw, thank you!!!

Oh, and I didn't mean to minimize it at all! I meant just not to worry about it unless something comes up that you have to worry about, you know? We actually had to go through it twice. My husband and I were checked when we were first TTC in 2005 and both came back clean. Cut to 4 years later and 7 failed IVF's. We moved on to donor egg and our donor had to be checked (even though she wasn't jewish) and my husband had to be checked AGAIN because new tests had been developed in the previous 4 years. Just like any other test, you do worry until you get the results, but, try not to!

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:344f7324-109a-4773-8e22-2f2ab98d8489">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : Aw, thank you!!! Oh, and I didn't mean to minimize it at all! I meant just not to worry about it unless something comes up that you have to worry about, you know? We actually had to go through it twice. My husband and I were checked when we were first TTC in 2005 and both came back clean. Cut to 4 years later and 7 failed IVF's. We moved on to donor egg and our donor had to be checked (even though she wasn't jewish) and my husband had to be checked AGAIN because new tests had been developed in the previous 4 years. Just like any other test, you do worry until you get the results, but, try not to!
Posted by LBRM_NJ[/QUOTE]

Oh my goodness- what a process! You're a strong woman to go through all of that... but the outcome looks to be soooo worth it!! A gorgeous little girl!

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:abfa0b2c-74e6-486c-bd59-146209f6aae8">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : They said it can be up to $3000.....WOW! I feel lucky to not have to pay a ton. I have this like insane fear that we will both be carriers for Tay Sachs (did a research paper on it in college and now it is one of my greatest fears for my future children) and then we'll have to think of different options as far as having children goes<strong> (if we are both carriers, we discussed that we wouldn't risk having biological children)</strong>. I realize that it is not really rational, but whatever... it's stressful!
Posted by sb9411[/QUOTE]

We also came to this decision before I was tested. It just breaks my heart to think about. But FI keeps reminding me that we are lucky to live in a time where doesn't mean we can't have kids, it only means its a little more difficult.

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:8c204cb7-fdd3-4c62-ac8c-ea49bcfee6fd">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : We also came to this decision before I was tested. It just breaks my heart to think about. But FI keeps reminding me that we are lucky to live in a time where doesn't mean we can't have kids, it only means its a little more difficult.
Posted by MrsMLRB[/QUOTE]

Soooo true. Well, I'll keep you up to date on our results and you do the same for your FIs results (which I'm sure will be just fine!)

sb9411 · March 2011

PS- I love that we are date twins......teachers, jewish etc!

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:42194187-a246-4614-bf21-8df5de0d9fd7">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]PS- I love that we are date twins......teachers, jewish etc!
Posted by sb9411[/QUOTE]

I prefer doppelgangers since we have so much more in common than just being date twins. I am also pretty sure if we ever met the apocalypse would happen since we are the same person <img src="http://cdn.cl9.vanillaforums.com/downloaded/ver1.0/content/scripts/tinymce/plugins/emotions/images/smiley-tongue-out.gif" border="0" alt="Tongue out" title="Tongue out" />

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:2d3f9a7d-0953-41a4-8dbd-955530e2d88b">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : I prefer doppelgangers since we have so much more in common than just being date twins. I am also pretty sure if we ever met the apocalypse would happen since we are the same person
Posted by MrsMLRB[/QUOTE]

HAHAHA!!! Very true....... It's a little freaky, people are collecting canned goods in case we ever do!

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:9f1f66ff-8735-419f-9daa-8b34e5fdb9d6">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : HAHAHA!!! Very true....... It's a little freaky, people are collecting canned goods in case we ever do!
Posted by sb9411[/QUOTE]

Aww that made my really laugh out loud. Which I needed after this conversation.

As LBRM said, there really is nothing to worry about until you get your test results. Not that I practice what I preach.

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:9f555ebf-54b6-4d32-805d-4c22e832e878">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : Aww that made my really laugh out loud. Which I needed after this conversation. As LBRM said, there really is nothing to worry about until you get your test results. Not that I practice what I preach.
Posted by MrsMLRB[/QUOTE]

Good!!
Well, we're meant to be a little neurotic... there must be a gene for that.

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:57a4d3f3-8477-47e4-81bb-b1cfeba67377">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : Good!! Well, we're meant to be a little neurotic... there must be a gene for that.
Posted by sb9411[/QUOTE]

Also, I never posted this on September 2011 because I just didn't want a ton of internet strangers knowing my personal business. I realize people will see it here but so few people actually come to this board so I don't mind. But I probably won't mention it in the other thread.

sb9411 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:9c4af63a-cb77-4550-8561-fa0cdd2e5c74">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : Also, I never posted this on September 2011 because I just didn't want a ton of internet strangers knowing my personal business. I realize people will see it here but so few people actually come to this board so I don't mind. But I probably won't mention it in the other thread.
Posted by MrsMLRB[/QUOTE]

I understand... .you could even delete that you referenced that you would answer me over here.... and people will never know ;-)

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:1eae25da-38d7-4bc6-b860-62b5dfac09f9">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : I understand... .you could even delete that you referenced that you would answer me over here.... and people will never know ;-)
Posted by sb9411[/QUOTE]

I may do that but I don't know that people really are THAT interested in my reply. I am interesting but not that interesting.

Bonzo2011 · March 2011

Since it looks like most of you have gone through this process, can I ask a couple questions? Is it still important for me to get tested even though my fiance is not of Jewish ancestry? My aunt wants me to, but chances are so very slim that FI will have any matches that I don't know if there's a point. I know it's common for Jewish couples to get tested, but FI's family is from such different areas than any of my ancestors, I really doubt it's an issue. Any advice?

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:5c414f9d-f316-4885-b374-45b1828fc326">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]Since it looks like most of you have gone through this process, can I ask a couple questions? Is it still important for me to get tested even though my fiance is not of Jewish ancestry? My aunt wants me to, but chances are so very slim that FI will have any matches that I don't know if there's a point. I know it's common for Jewish couples to get tested, but FI's family is from such different areas than any of my ancestors, I really doubt it's an issue. Any advice?
Posted by Bonzo2011[/QUOTE]

Still do it. I was shocked to find out I was a carrier (since my mother wasn't Jewish and neither side of my family has a cystic fibrosis carrier.) You just never know.

LBRM_NJ · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:5c414f9d-f316-4885-b374-45b1828fc326">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]Since it looks like most of you have gone through this process, can I ask a couple questions? Is it still important for me to get tested even though my fiance is not of Jewish ancestry? My aunt wants me to, but chances are so very slim that FI will have any matches that I don't know if there's a point. I know it's common for Jewish couples to get tested, but FI's family is from such different areas than any of my ancestors, I really doubt it's an issue. Any advice?
Posted by Bonzo2011[/QUOTE]

I think you should still be tested. I am of the belief that the more information twe have, the better. IF you test positive for anything, then your FI can be tested for it. Even though something is predominately linked with a particular group doesn't mean that someone outside of that group may not be a carrier.

JoBell123 · March 2011

I hadn't even thought of this! Of course it makes sense to do. Is this something that I ask my regular doctor about?

LBRM_NJ · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:0b425c23-9512-4fb5-bfd1-ab1eb033a5c9">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]I hadn't even thought of this! Of course it makes sense to do. Is this something that I ask my regular doctor about?
Posted by JoBell123[/QUOTE]

I guess your regular doc could do it, but, I did it through my ob/gyn.

jarynslaby1 · March 2011

Sorry this is late, I saw your post on the Sept. board just now, but I never knew of this!! I am probably the worst Jewish girl ever because I am clueless about a lot of "Jewish" things (but hey...I'm learning!!) My FI is Catholic and I am Jewish, we both decided that we wanted a Rabbi to marry us and that we are going to raise our kids Jewish. We finally found a Rabbi that would marry us, and he highly encouraged my FI and I take "introduction to Judaism" to learn more about Judaism. But thanks for posting, I will look into it.

Bonzo2011 · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:df3e9015-0abc-43e3-9de5-a13f139ecc85">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]In Response to Re: Jewish Genetic Disease Testing. : I think you should still be tested. I am of the belief that the more information twe have, the better. IF you test positive for anything, then your FI can be tested for it. Even though something is predominately linked with a particular group doesn't mean that someone outside of that group may not be a carrier.
Posted by LBRM_NJ[/QUOTE]
That's a good point. Ok, I'll look into this. Thanks for the advice!

Rachiemoo · March 2011

Please, please get tested! I didn't prior to TTC, and my OB ran all the tests after I was pregnant... and I then found out I am a CF carrier. Luckily my husband is not a carrier, but it was really hard waiting the 3 weeks to find out if he was or not.

Also, even if you are both carriers you can still have a healthy child, my cousin and her DH are both CF carriers and I believe they had IVF done, where the doctor screens to see which eggs/sperm are carriers (I don't know if I am explaining it with the proper terms, but you get the gist).

vlevitt · March 2011

i also reccomend having it done. knowledge is power, and also, there's a fairly low chance that both of you will be carriers for these diseases. we had me tested first, and i am not a carrier for any of them, so DH got off without having to do it!

v.

Flagstones925 · March 2011

I don't know much about this stuff, and can't seem an answer about this but maybe somebody on here will know. My fiance and I are both half-Jewish, but both Ashkenazi Jews on one side. Would we need to get Jewish genetic testing? Also, how long does the process take? Thanks!

MrsMLRB · March 2011

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_jewish-genetic-disease-testing?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:33050c0c-9a56-42f6-8542-024d7d16ba9ePost:102275ab-2e14-4bfd-97cc-7d2e3a1d3705">Re: Jewish Genetic Disease Testing.</a>:
[QUOTE]I don't know much about this stuff, and can't seem an answer about this but maybe somebody on here will know. My fiance and I are both half-Jewish, but both Ashkenazi Jews on one side. Would we need to get Jewish genetic testing? Also, how long does the process take? Thanks! :)
Posted by Flagstones925[/QUOTE]

Yes you should still get tested. My mother was raised Catholic and my rabbi emphasized that I needed to get tested and I shouldn't think I didn't need it just because only one of my parents are Jewish. I did the testing and it turns out that I am a carrier for cystic fibrosis. So yes, you should still get tested.

amberhessenberg · March 2011

my FI and I did it for free with Dor Yeshorim premarital genetic testing. I'm not sure if this is only in new york, but you recieve an number you call to check if you both are clear.

Jewish Genetic Disease Testing.

Re: Jewish Genetic Disease Testing.

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