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FORUMS > Tay Sachs
Replying to Topic: Late-Onset Tay Sachs
Created On 4/8/05 5:53 PM by torahpsych


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torahpsych
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4/8/05 5:53 PM
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I am wondering if anyone who is reading this has heard of, is involved with or knows about Late Onset Tay Sachs (LOTS). this is a mutation of the regular tay sachs gene, in that instead of there being no Hex A in the cells, so that the nerve cells die after a few years, there is a small residual amount that enables the cells to live much longer. As a result, Nerve cells begin to show deterioration only when the person is an adolescent or older, and the disease develops over decades instead of years. Symptons range from tremors and slurred speech, slow muscle wasting and cramps to, in some cases, limited mobility, swallowing issues, etc. My son was diagnosed with this several years ago, but I have not met another frum person who is experiencing this. Anyone who has heard of this or knows about it, please chime in.


Edited: 4/8/05 at 5:55 PM by torahpsych
 
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hb
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4/10/05 1:14 AM
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Gut Voch,
I was wondering if you are in touch with Rabbi Yossel Ekstein from Dor Yesharim. He might be helpful in connecting you with other parents struggling with the same disease. He's the founder/director of Dor Yesharim, and had Taysachs children himself. He's probably your best bet for "parent matching". 1-718-384-6060
Also, try http://www.ntsad.org/ is a website for taysachs related diseases including LOTS and Neiman Pick Disease etc.. They have message boards where you may also find other frum families.
Hatzlocha Rabbah.
HB


Edited: 4/10/05 at 1:16 AM by hb
 
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torahpsych
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11/26/06 8:38 PM
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I have been in touch with rabbi ekstein, who was very kind regarding having my children tested via Dor yeshorim. he could not link me to anyone in the US who is frum and experiencing the same issues.

I know it's been one and a half years since i first posted, but I forgot about this site until I saw an ad on the Arutz Sheva site. Fascinating that in that time, no one else has followed this thread either. i guess it really is as rare as they said.
 
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hb
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11/27/06 9:25 AM
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How's your son doing at this time? You might want to try foundations that research this disease. They sometimes offer a parent to parent program.
You should also try Yahoo groups, they have disease specific support groups.
Hatzlacha!!
 
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lifesaver1
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2/4/07 1:02 AM
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my sister was recently diagnosed with Late onset tay-sachs
and I am wondering if anyone can point me towards some information
regarding what we can expect and perhaps if there is anything that
we as her family should be doing for her.
If anyone has any information it would be much appreciated.
zey gezhunt


-------------------------
To know what is right is Ruach HaKodesh, To know what is wrong and remain yet silent transforms simple cowardice into great obscenity. -R'n Faige Teitlebaum-
 
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torahpsych
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5/4/10 4:10 PM
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to the person whose sister has been diagnosed with LOTS. I don't know what the rules are for this foirum if you could contact me directly. My son is now 26 and coping well; we have learned a lot and would be happy to share what we know. I am going to list my e-mail address, and welcome your getting in touch:
torahpsych@sbcglobal.net
B'Hatzlocha
 
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