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TOPIC TITLE: Neurofibromatosis 1
Created On 1/15/06 11:37 AM
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Happy
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Joined: Jan 2006

1/15/06 11:37 AM
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Does anyone know about NF 1? Is there any prenatal screening that you know of that is okay by halachic standards?


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caryn zabusky
 
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talmid
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5/14/06 9:22 AM
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Maybe you could do PGD.


Edited: 6/4/06 at 11:28 PM by talmid
 
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BoruchHashem
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5/17/06 5:24 PM
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Is there anything a parent can do to help a child suffering with neurofibromatosis?
 
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Jhoey
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5/17/06 8:37 PM
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Is there a frum support group for nf ? Does anyone know of a good doctor in the New York, New Jersey area that deals with nf particularly with neurofibromas internally?
Where cn I get more information about children with nf1?


Edited: 5/18/06 at 6:25 AM by Jhoey
 
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BoruchHashem
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5/21/06 3:48 PM
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My grandon, 2 years old has delayed speech which is a complication of NF. Does anyone have ideas how we might be able to help him?
 
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Jhoey
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5/21/06 10:18 PM
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There is something called Early Interventions that most states offer for children under 3 who need therapy. a therapist comes to your home and evaluates the child,, if they are elgible they can receive speech therapy with a therapist in their home. They also evaluate the child in other areas if they need physical therapy or occupational therapy if they are delayed in those areas. The younger the child gets help the more success they have. all of these services are usually free of charge. Good luck
 
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benjamins
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11/5/07 2:58 PM
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Hi all...

i found a website of two israeli guys that provide a service of sending a wish to the western wall in jerusalem.

they charge for this service but they give you a proof of them placing the wish note in the wall (a picture of them in the western wall with your wish and your name on it)

i've used their service and it was fast and i got my proof.

i recommend you to try it or at list take a look.

http://www.holylandwish.com/

SHALOM, Benjamin


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shmulik
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2/19/08 10:42 PM
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Question - I know this is an autosominal dominat gene with 50% chance of passing on...
What I want to know is, is it possible for someone to be a carrier of NF1 without actually having the condition?
 
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BoruchHashem
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2/20/08 4:02 AM
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I have been told you can be a carrier without having the condition. My doctor told me that he has an elderly man (80) as a patient with this condition. With the right treatment and good patient attitude one can have a good fruitful life
 
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CAP
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2/3/14 10:44 AM
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there is a frum support group for MOM's of those with NF.
the email to join is skindparent@gmail.com
 
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