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TOPIC TITLE: Fragile X
Created On 3/30/05 1:33 AM
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Healthster
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3/30/05 1:33 AM
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Anyone out there know that they are a carrier of the fragile x gene and would like to just share information?
 
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sss58
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3/30/05 11:55 AM
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yes, i am a carrier and have very much looked into my options. I have spoken to various genetic counslers and rabanim about what is out there and is halachically permissable. Please ask specific questions because I have researched this area greatly. If you have information as well, I would like to hear what you know.
 
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jenny
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5/26/05 4:26 AM
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what do the rabbonim say about cvs testing ?
 
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Eminas Hashem
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5/26/05 10:06 AM
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Each question involving haluchah has to be asked individualy even when the same question arises again to the person.
Good Luck
 
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sss58
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5/26/05 2:07 PM
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I agree that each person has to ask their individual questions to their rav. It is definitely not a black and white issue. I have heard that there are some rabbanim that say it's ok. The Rav that I spoke to doesn't think it is the best option because it can't be done early enough if someone would want to abort as a result of it. This would have to be within the first 40 days of pregnancy. As I said this is the Rav that I spoke to who answers for me. I do know that there are other Rabbanim that say otherwise. I don't know how much you have looked into this, but IVF with PGD are options that are more widely accepted. If you would like more information on this I can tell you were to look it up so you can ask your Rav. Hatzlacha
 
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jenny
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5/31/05 3:46 AM
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does anyone know of a Rav that ok cvs
 
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sss58
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6/28/05 12:14 PM
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i don't know names of rabbanim that say it's ok. but i can get that information. as soon as i know i will post it. i actually don't know if they say cvs is ok or amneocentesis ( a simular process that can be done a lot earlier than cvs.) cvs can be done at about 16 weeks but amneocentesis can be done as early as 8 weeks i believe. a great site/place to find out this info is on this site http://www.reproductivegenetics.com/. they are located in chicago and are one of the top places that deal w/ these issues and do the procedures involved. I have spoken to them on the phone as well and they have been very helpful.
 
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bmr
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7/25/05 2:41 PM
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I know a couple that has asked this "shailoh" - i can certainly ask them if they'd be in touch with you, if you want to give contact info...
 
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Eminas Hashem
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First, it's a CVS and not an Amniocentesis that can be done early in pregnancy.
I beleive R' Fischel Hershkowitz (Klosenburger Dayan) and R' Avruhm Leitner deal with these sheiles, but don't quote me for that, you'll have to look into it yourself first. You can also ask Rabbi Ekstein from Dor Yesurim to refer you to a Rav.
I would also recommend you read up on the risks involved with CVS, especially when it's done very early in pregnancy (which would have to be the case, so that an abortion would be able to take place before the fetus reaches forty days).
Also, in the case of a twin pregnancy I was told, a CVS wouldn't be available, since they would have to inject dye, as not to sample the same fetus twice, and that can only be done with and Amniocentesis. Although, I'm not sure if it holds true in every center.
Another point to consider, even if you'll get a heter for abortion, it will probably only include an affected boy. It's very unlikely that any Rav will approve aborting a carrier girl as well. As with PGD (preimplantation genetic diagnosis) in the case of an IVF, it's likely not as complicated to get a heter for eliminating a girl who carries the mutaion.
Lot's of hatzluchah, and if you have any more questions, I'll be eager to try to answer them for you. I researched allot and know much on this subject.
 
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234
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8/22/05 12:32 PM
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Edited: 10/31/05 at 12:24 PM by 234
 
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sss58
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8/24/05 1:18 PM
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"IVF HAS NEVER BEEN SUCCESSFUL WITH FRAGILE X. "
I don't know if you meant to write that, but it is an untrue statement. I am not married yet so i am not experienced yet, but i am a carrier of fragile x and have spoken to many professionals in the feild and IVF along with PGD has certainly been successful in eliminating fragile x. I may have misunderstood what you said so if i did, please clarify.
 
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Mstone
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1/15/06 9:53 AM
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We were given very useful and practical advice by the Rabbanim at Machon Puah in Jerusalem. see http://www.puah.org.il/ for more info.
 
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froggy4
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7/8/07 10:10 PM
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i see that you wrote on here awhile ago but im wondering if i can get in touch with you? i am a fragile-x carrier as well


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froggy4
 
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CAP
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7/10/07 7:29 PM
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FROGGY,

i pm'ed you - please check!!
 
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froggy4
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7/11/07 6:20 PM
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u pm'ed me ? what does that mean? u im'ed me?


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froggy4
 
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CAP
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7/11/07 8:44 PM
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i tmeans private messaged you!!

On top left corner under the frum support symbol, there is a little padlock with 1 message etc. Click on the padlock an it will take u to ur private messages....

Hope to hear from you!!
 
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froggy4
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9/6/07 12:02 AM
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anyone here who's a carrier of fragile-x and have done ivf with pgd?


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froggy4
 
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Ziri
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3/29/11 4:47 PM
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I see there have not been any postings for quite sometime. I suspect my teenage son may have fragile x. I would like to speak with a rav about this. can anyone suggetst anyone who is knowledgable about this situation?
 
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CAP
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3/30/11 4:12 PM
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depends why you need to talk to Rav. - some rabbonim are experts in certain things..

you can pm me if you do not wish to post in pulic.
 
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Ziri
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4/1/11 12:54 PM
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how do u do that?
 
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CAP
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u see next to each post, there is an orange padlock on RHS. click on mine and it leads u to screen tp private message me.
then on home page when u are signed in, on left hand side there is a padlock which notifies you if there is a mesaage..
 
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