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Learning abilities of NF1   Message List  
Reply | Forward Message #6374 of 6809 |
Re: [Neurofibromatosis] Re: Learning abilities of NF1

hi comdyne (i do not know exact name),

nice reply and pretty much technical...i do not understand the technical terms but can understand that you are a doctor or some thing...?

and for treatment the docs (dermatologists) i have met say there is'nt any cure to this and nf1 happens by chance to 1 out of around 40000...may be i need to talk to neurologist...

plus another thing about which i am concerned is that i read somewhere if a person who has nf1(male/female - i am a male), there are 50% chances that his/her children will have it.

is it true ?
any way as the chances can be reduced ?

and you mentioned abuyt dr.sameul, he has got any website etc
please do reply ?

thanks
zubair



On Tue, Oct 21, 2008 at 9:23 AM, comdyne2002 <comdyne@...> wrote:

I think the key to correcting or perhaps curing this disease is to
look into the endocrine system. An imbalance between the hormones
secreted by the 'system' has a profound effect upon all functions of
the body organs, the skin being the largest of them all. There are a
few doctors who provide testing and supplemental enzyme/hormone
treatments that are intended to restore normal endocrine balance in
the body. I am convinced that the answer will be found by balancing
the secretions of this critical body system. I do not believe that
infectious organisms play any major role in this disease but may be
present as a result of it. I also do not believe that there is a
genetic condition other than weak endocrine tendencies which are
genetically transmitted that would make the offspring more
susceptible to the development of various conditions but to blame the
condition solely on heredity makes a cure impossible in the minds of
researchers and thus diverts their efforts to other unrelated areas
of research effectively closing out any possibility of an effective
treatment ever being found. Even if one believes that the disease is
simply fate and thus beyond control is futile thinking and counter-
productive. Dr. Samuels believed that he could cure the condition by
stimulating the endocrines with high frequency diathermy. Although he
never treated the condition, he was confident that it would respond
as the condition was similar to other diseases that he successfully
treated using said technique.

I do not have this disease; just for the record...



--- In neurofibromatosis2@yahoogroups.com, "Zubair Aslam"
<zubairaslam1979@...> wrote:
>
> hi jhon,
>
> thanks for the reply and yes it was good...lolz...
> well the excersaie thing was said by millitary doctors, actually my
nf1 was
> diagnosed when i signed for army. during the medical they told
me what
> nf1 was and how it can increase under extreme conditions at
millitary
> acaedmy for example they make you stand in snow fall and then
shower you
> with water and during this activity you are just wearing a
underwear so
> under these conditions my mind and body wont cooridnate properly
and nf1
> might hit me hard....
SNIP




Tue Oct 21, 2008 4:46 am

zubair1979
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Forward
Message #6374 of 6809 |
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Hi All, I am zubair and have NF1, it's quite severe as i have number of coffee marks (on right wrist and under left arm) and plenty of bumps (numbering in...
Zubair Aslam
zubair1979
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Oct 15, 2008
11:12 am

hi subair i like u name well i do have the same nf1 it was dignoze at age 6 and i do have learning desability and i have my masters in special education it...
Tessy Merino
laredogirl_2...
Offline Send Email
Oct 15, 2008
2:06 pm

hi tesy, destiny, andera merino thanks for the reply and a nice inspiring story...best of luck to you and your family members your children will require...
Zubair Aslam
zubair1979
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Oct 16, 2008
5:08 am

Hi Zubair, First of all there is no cure for NF, learning disabilities are very common with NF. I have then myself, you have 1 up on me I never went to...
John
bombardj1
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Oct 18, 2008
2:01 pm

hi jhon, glyn and all glyn you are absolutely write that we should remember that there are people who are worse then our selves. and i used to concider my nf1...
Zubair Aslam
zubair1979
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Oct 20, 2008
4:01 am

I have not heard that exercises makes tumors grow more, I just don't know. I have heard that a cholesterol called lovastatin might help a little with memory,...
John
bombardj1
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Oct 20, 2008
12:14 pm

hi jhon, thanks for the reply and yes it was good...lolz... well the excersaie thing was said by millitary doctors, actually my nf1 was diagnosed when i signed...
Zubair Aslam
zubair1979
Offline Send Email
Oct 21, 2008
4:01 am

I think the key to correcting or perhaps curing this disease is to look into the endocrine system. An imbalance between the hormones secreted by the 'system'...
comdyne2002
Offline Send Email
Oct 21, 2008
4:23 am

hi comdyne (i do not know exact name), nice reply and pretty much technical...i do not understand the technical terms but can understand that you are a doctor...
Zubair Aslam
zubair1979
Offline Send Email
Oct 21, 2008
4:46 am

First, NF1 there is 1 to 3000/4000. NF2 is 1 to 40000 people. if 1 person has NF there is a 50/50 chance that the child will or will not have NF, if both...
John
bombardj1
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Oct 21, 2008
5:36 am

hmmmm may be the chances of nf1 being transfered to children depends upon the severity...and i always pray that none of my children (if i have them ) have it...
Zubair Aslam
zubair1979
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Oct 21, 2008
5:40 am

Dont quote me on this and I dont know how true this is but i'm sure that they have found the faulty gene that causes NF (see email below) and also im not sure ...
Steve Parker
oosteveypoo
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Oct 21, 2008
10:25 am

http://www.genetics.com.au/pdf/factsheets/fs37.pdf Genetic testing for changes in the NF1 gene is not widely available and is currently expensive but can be...
Steve Parker
oosteveypoo
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Oct 21, 2008
10:38 am

I do not use my name on the internet. I am not a doctor but am an amateur researcher specializing in the use of moving energy in the correction of metabolic...
comdyne2002
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Oct 21, 2008
1:44 pm

NF is not really a disease of the skin NF tumors grow off nerves, they can have long roots, so lets say you have a tumor on your elbow the nerve it could be...
John
bombardj1
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Oct 21, 2008
3:23 pm

well thanks again for the reply and far a amature researcher...this is a lot...frankly spekaing it seems purely professional thanks for the explanation...
Zubair Aslam
zubair1979
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Oct 22, 2008
3:07 am

I would like to add another personal opinion; I believe that sun exposure on a daily basis of about 1/2 hour may be beneficial in curtailing this condition....
comdyne2002
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Oct 22, 2008
4:47 am

for spelling of english, thanks to spell checker...other wise i am a worst speller and i live in Pakistan...a country in south asia and when i told the...
Zubair Aslam
zubair1979
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Oct 22, 2008
5:01 am

i Zubair, About the army sitaution. Did they let you join? I was interested in joining the Ai froce but I am afraid they will not accept me b/c of my nf (they...
sunshinz25
Offline
Nov 1, 2008
5:50 pm

hi there, well first of all soory for the late reply...it was weekend and i was in my village and no internet access there.... well i applied to join acaedmy...
Zubair Aslam
zubair1979
Offline Send Email
Nov 3, 2008
4:39 am
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