Conference taveng::bagels

	Before any anti-abortionist starts flaming away on the 
morality of your friends' having an abortion, a few facts on 
Tay-Sachs (off the top of my head, I don't have my references 
handy):

1. There is no known cure at this time.

2. Basically, what happens is, you get a normal-looking newborn, 
who progresses to a certain stage, then the nervous system 
deteriorates,until the child dies at age two or three.  
I have never heard of a Tay-Sachs case where the child didn't die.


While I know that there are some parents out there who can handle 
the stress of taking care of a child who never really is more 
than a newborn, knowing all the time that death is inevitable, 
I know that _I_ would never be able to handle it, and I don't 
personally know anyone who could.

As to whether to go ahead and try to have children, when both parents 
are carriers, I think that this has to be an intensely personal 
decision.  I've heard of cases where the parents were both 
carriers, the woman got pregnant accidently (having decided not 
to have children). Rather than get an abortion immediately 
(their first response) they waited till the five-month amniocentesis, 
to find out that the fetus did _not_ have Tay-Sachs.  So they 
went ahead and had the child.

I'm sorry for your friends, both for the loss of their potential 
child, and for the breakup of their marriage.  I hope they both will 
find some happiness in the future.

Bobbi

    Given the circumstances, I would consider it to be more of an averah
    to let a child be born into such a defective body.  The couple did
    the right thing.
    
    It's guilt-tripping caused by the fanatics in the pro-human-sacrifice
    movement (they call themselves "right to lifers") who create this
    level of stress from a medical procedure.  We need better support
    mechanisms for (potential) parents in this situation, so their
    marriages and lives don't come unglued by the stress.
                                           

    I agree with .1.  My husband and I were tested before our marriage,
    and neither of us is a carrier.  I believe my sister-in-law (husband's
    kid sister) was also tested before her marriage; they now have a
    baby daughter.
    
    Our feelings might be different if there were anything that could
    be done for Tay-Sachs victims.  One of my (adoptive) cousins has
    two children with PKU intolerance (whatver the technical term for
    that is).  Since they were diagnosed at birth, both children are
    normal; for that genetic disorder a special diet (without the
    particular amino acid) is needed for several years.  Maybe some
    day there will be something that will work for Tay-Sachs.
    
    Charlotte

    It's not that simple.  Tay-Sach is not the only desease of this
    nature.  When my daughter got sick, some mental disorder, the doctors
    put a lot emphasis on our Jewish origin.  We were told that there
    is quite a number of similar things, all this the same outcome.
    These deseases are rare, some very rare, so there is no routine
    prenatal testing.  Another factor is that this testing is very
    expensive.  Fortunately for us, our daughter completely recovered, 
    evidently it was something different, but the diagnosis was not
    set even after a few thousand dollar worth of testing, including
    CT scan.
    
    Leo

    Lest we feed paranoia: Sad to say, but there are plenty of genetic
    diseases, and Ashkenazic Jews are not the only ethnic group by far
    that carries them.  We are not singled out for this particular trouble!
                                
    I don't know if that information makes me feel better or worse,
    though....

    	You mentioned genetic disorders that may or may not be related
    to Askenazi jews.  Another disorder that people should know about
    but few are aware of is Tourette's Syndrome.  This disorder was
    unfamiliar until a dozen years ago when a mother had a son with
    it and then fought to have the medical community deal with it. 
    	What Tourette's Syndrome symptoms are, is uncontrolable motor
    tics that the sufferer cannot stop.  These are from arms and head
    movements to involuntary verbal sounds going as far as swearing
    outright in public.  While this may sound unbelievable, it is real
    and makes everyday life for these people diffilcult.
    	There is estimated to be as many as 250,000 people afflicted
    with it and more than half are not aware of it.  Many think they
    are either wierd or going crazy.  But it is really a neurological
    disorder.  For some reason may of the people who have it and some
    of the reports on Tourette's Syndrome seem to involve mostly Askenazie
    Jews.  It usually afflicts boys starting at age 7 or 8 and last
    for the rest of their life.
    	Very often the person suffers social alienation and hostility
    as tourett's appears threatening when one sees a person violently
    swearing out loud in public.  Also any body motions can appear as
    a form of assault and threats.
    	Fortunatly there is an organization call the Tourette's Syndrome
    Association in Bayside, N.Y.  However it is young but they are being
    a great so far.
    	 I hope this reply helps somebody or some parents if they see
    someone who cannot control their actions and has bad motor tics
    or verbal noises.
    
    Ron Goodstein

    
    
    	Bayside is on Long Island, I don't have the number,
    	but the area code is 516 for info.
    
    	Is there any kind of treatment other than Tranqulizers ?
    
    	Michael
    

While Bay Shore, Bayville and a bunch of other towns on Long Island are
in the 516 area, Bayside is in the New York City borough of Queens,
and thus has an area code of 718.
				/AHM

    
    	You are right, I was thinking of BayShore.
    
    	Sorry.  (When did this 718 thing happen ?)
    
    	Michael "Who thought of only 212 and 516"
    
    

    	That is correct.  The area code is 718 and let me give you the
    rest of the number.  It is 718-224-2999 and it is in Bayside, N.Y.
    There is also a Boston chapter and the person to contact is Steven
    Bachner in Allston ,Mass.  If you have anyfuther questions please
    feel free to call me at DTN 283-7485 or send mail to GRDIAN::GOODSTEIN.
    I can also be reached at home at 438-1564.
    
    Ron G

    Several months ago, the 212 (NYC) calling area was split:
    
    212	Manhattan
    	Bronx
    
    718	Queens (long lost homeland...)
    	Brooklyn
    	Staten Island
    
    ----------------------------------------
    
    On another front, I was tested for Tay-Sachs through a Beth Israel
    (Brookline) outreach program some years back.  They take a blood
    sample, then mail you the results in a few weeks.  Simple, low/no
    cost.

    
    
    	Can you reply with the tele number or address.
    	I am sure some of use would like to get in touch
    	with them.
    
    	ANy particular Department within Beth Israel / Doctor ?
    
    

    I was tested while an undergraduate, through MIT's health dept.
    Beth Israel picked up blood samples once a month.
    I'm certain you can call the main number (they're in Brookline)
    and ask for info.
    				--- The Wandering Levite
    

    The other place for testing (where my wife and I were tested is
    I think its called the Kennedy-Schriver building accross from the
    State hospital on Trapelo road in Waltham. The test was quick,
    fairly painless and the results are sent to you and your DR.
    The organization was the Tai Saks .... ... I forget. If anyone
    needs it I can search around for it.
    
        jeff

    Pardon my ignorance, but what does "Ashkenazic" mean?  Can you give
    an explanation?  Are there more sub-divisions within the Jewish
    people?  Is Chaasiddic [spell check?] another, or is this something
    else?
    

re: .15:
    Pardon my ignorance, but what does "Ashkenazic" mean?

In words of one syllable, "Germanic."  Modern Jewery follows one of
two main traditions, Ashkenazic (European), and Sephardic (Mediterranian).
There are some subtle differences in worship and interpretation of the
law, and the two traditions developed two different vulgates: Yiddish
among the Ashkenazi, and Ladino among the Sephardi.

"European" means, more or less, "North of the Alps", while "Meterrainian"
includes Southern Europe (especially Spain), North Africa, and the
Middle East.  Immigration into Israel has changed things, of course.

Chassidism is a subdivision within the Ashkenazi.

Martin.

    RE: .16  >In words of one syllable, "Germanic."

    Nwnder s'hard tunnstnd you Martin.  You have to learn to articulate
    your words  :^)  :^)

Look here, where I come from (Rogers Park in Chicago), Ashkenaz was the
name of the local deli.  Imagine my suprise when I found
out there was an entire religious movement named after a deli.

Martin.

At a shul I used to go to, there was a man named Ashkenazi.
He was a Sephardi.

>At a shul I used to go to, there was a man named Ashkenazi.
>He was a Sephardi.

Not surprising.  You frequently see names which indicate what towns a long
ago ancestor came from.  This resulted when family names became required.
And in order to distguish himself a person would say "I'm Moses from Warsaw,"
(which becomes Moses Warshawer in Yiddish) or "he's Joseph the Ashkenazi,"
(from which the "the" get dropped).  These became their family names.  It
would not have made much sense to take the above names if these people were
in their place of origin  8^{).  The next step is that the Ashkenazi family in
a Sephardic community eventually takes up the Sephardic minhag.


Gavriel

Oh yeah, it is an Ashkenazic practice to lump all Jews of the Mediterranean
and arabic regions as Sephardic.  There were other minhag groups other than
Ashkenaz and Sephard (ie: Yerushalmi) in the arabic regions though their
distinctions are starting to fade now that most of those communities have
moved to Israel.

    I have just discovered this note, which appears to have been dormant
    for a while.  As I have a vested interest, I'd like to provide some
    information for anyone who may be interested.
    
    Tay-Sachs is a recesive genetic disorder.  This means that both parents
    must have the mutant gene in order for a child to be born with the
    disease.  The chances of two carriers having a Tay-Sachs child are 25%. 
    The chances of having a child who would be a carrier are 50%, and the
    chances of having a child without the mutant gene are 25%. There are no
    ill-effects in being a carrier.
    
    Tay-Sachs is most commonly found among Ashkenazi Jews, but is also
    quite common among people of French-Canadian descent, and it turns up
    in the general population.  Because so many Jews have pre-marital
    Tay-Sachs testing, about 50% of the babies born with the disease in the
    past few years have not been from this ethnic group.  I have met
    Tay-Sachs families who are black, Hispanic, and from several different
    European backgrounds with no known Jewish ancestry.  
    
    Tay-Sachs is one of a group of closely-related enzyme-deficient
    diseases.  In its more commonly known infantile version, a child
    appears normal at birth, and frequently follows normal development in
    walking, talking etc. However, once the disease takes hold, the child
    regresses until he/she becomes totally helpless and dies.  This is
    usually before the 6th year of life.  There is a lesser-known rare
    mutation which strikes a healthy individual later in life, usually
    during the second or third decade. There is a gradual destruction of
    brain cells which leads to deterioration of capabilities.  This is the
    version which my daughter was diagnosed with at age 17 a couple of
    years ago.
    
    I strongly urge all people of Ashkenazi origin to get tested.  It is a
    simple blood test.  You go to your local physician who will make the
    arrangements to get the blood to the nearest Tay-Sachs lab.  (There are
    several of them in the US, as well as in other countries.)  If you find
    that you are a carrier, you should get genetic counseling to discuss
    the implications of this to your extended family.  
    
    For more information, National Tay-Sachs and Allied Diseases is a
    central clearing house of information.  In the US they are at:
    
    	2001 Beacon St, Rm 304
    	Brookline, MA 02146
    	(617) 277-4463
    
    If you live in a country other than the US, this organization can send
    you the address of the group in the country in which you live.
    
    Regards,
    
    Judy
    
    

I recently met a couple who had had three children, one of whom had died of
Tay Sachs.  Since they wanted another child but didn't want to risk another
Tay Sachs baby, they were undergoing IVF (in vitro fertilization).  A single
cell removed from a four-cell embryo would be tested for Tay Sachs.  The
embryos themselves would be unharmed, and if they tested negative, they
would be transferred into the mother's uterus.  I gather this is a new
technique, and is not yet widely available.