Re: Genetic Research Workshop

[Guest guest]

Crew,

For those of you who were fortunate enough to attend the Jan.'99

research symposium in Pasadena in collaboration with HEI, this will

sound more like a very poor rerun! I did not realize that the booklet

that they gave out had most of what they said in it and therefore, tried

to read the captions and take notes--didn't do well--so much for not

hearing and not having a good set of ears to tell me all that!

At any rate, what really caught my attention because we've had such a

hot debate about it on the Crew was the statement that all of us are

born with about a dozen defects in our genes. But just having the defect

does not mean we will develop the syndrome--there has to be a " trigger "

that sets it off. What has not been discovered yet, is what triggers the

defect to develop into the syndrome--could be environmental and could

come from within us. But if we all tend to have about a dozen defects in

our genes; WHY couldn't we have defects on both the 17th and the 22nd

gene. Thereby, having some of the characteristics of both NF1 and NF2.

We all know that we all tend to have some things that tend to be exactly

like someone else on the Crew and some things that are different. Hence

somewhere between 2 and 4, and maybe as many as 8; different varieties

of NF2! For sure, none of us has to pray: " Oh, Lord, don't let me be

ordinary! "

By the same token; I hope that there is enough compassion in this Crew

to allow for those individuals who have been told by drs. that they have

both NF1 and NF2 to feel welcome instead of making them feel like

outcasts. They are probably even *rarer* than us NF2ers--lol. My 2 cents

on that.

Next item: The researchers were in agreement that it is a bad idea to go

hunting to find these defective genes. They also realize that a parent

or a child who worries that s/he has inherited the gene wants to *know*.

However simply knowing that yes, the defect has been passed on does not

mean that the off-spring will experience the syndrome--again, the

" trigger " comes into play! Plus the problems that the knowledge can

cause in health insurance coverage, employment, family life, etc. Note;

I haven't said what we already know; sometimes the tests are negative

despite the fact that we have already manifested the syndrome. or

hehe

They of course, showed the models as to show how we inherit our genes

from both parents and are of the opinion that about 70% of the hearing

impaired did, in fact, inherit the defect from *both* parents. Hence,

their interest in getting as much family background as possible.

This workshop took up one whole a.m. and I have 16 printed pages of what

they told us. But I've sort of covered the waterfrront.

Any of you who want to debate NF1 and NF2; have at it! I'm off to bed!

Hugs, ie

P.S. The comedian in the group, " Chuck " Berlin, Ph.D. said, " All you men

who want to live a long life and be very wise needed to inherit two " X "

chromosomes! "

[Guest guest]

ie,

There was some discussion about NF1 and NF2 some time ago but the intent was

clearly not to make anyone with both NF1 and NF2 feel like an " outcast " .

Some doctors claim it is impossible to have both NF1 and NF2. My feeling is

that this is not true and some people may very well have both NF1 and NF2.

That does not mean I consider myself better than anyone having both

disorders or that those who participated in the discussion think so either.

>

>

>By the same token; I hope that there is enough compassion in this Crew

>to allow for those individuals who have been told by drs. that they have

>both NF1 and NF2 to feel welcome instead of making them feel like

>outcasts. They are probably even *rarer* than us NF2ers--lol. My 2 cents

>on that.

>

>Hugs, ie

>

[Guest guest]

Re: Genetic Research Workshop

>

>

> Crew,

> By the same token; I hope that there is enough compassion in this Crew

> to allow for those individuals who have been told by drs. that they have

> both NF1 and NF2 to feel welcome instead of making them feel like

> outcasts. They are probably even *rarer* than us NF2ers--lol. My 2 cents

> on that.

Hi ie,

I just thought I would throw a little light on the NF1, NF2 subject.

While scrolling through the pages at the NFA- UK I came across a Tit Bit of

info. I can't remember under what heading it was now but it quoted that the

incident of having the combination of NF1 and NF2 came in at 1 in 22

MILLION. Now that is rare.

I think it was at a NF2 weekend where NF2ers and the Med Pros get together

and have a good time. While having one of their discussions the above was

quoted by one of the Med Pros.

So that being the case there should be at least 11 or 12 in the USA.

Here in Aussie we have a population of under 19 mil and we have within one

family 3 people with the combination. The NF2 is the lesser of the two but

the NF1 is extreme to the point that it has become extremely difficult to

walk. Very brave family as they never look for sympathy just understanding.

Puts the 1 in 22 mil a little out

don't you think!!! Hope this throws a little light on the subject.

You said < " By the same token; I hope that there is enough compassion in

this Crew

to allow for those individuals who have been told by drs. that they have

both NF1 and NF2 to feel welcome instead of making them feel like

outcasts. They are probably even *rarer* than us NF2ers--lol. My 2 cents

on that. " >

From your statement above there must have been someone come on who stated

that they had the combination of NF1 and NF2. I would have liked to have

seen that as the discussion must have taken place in the public forum of the

NF2 Crew and I can see your point in how it would seem to that person being

called in the nicest way of being untruthful. The longer the discussion went

on the more that person would feel unloved and unwanted. Well if they are

still out there drop me a line and we will become friends through E-mail.

Take care BB

from OZ

[Guest guest]

and Crew, As usual, I have managed to plant both feet squarely in

my mouth--too bad they weren't on my fingers! While " outcasts " is

definitely my take on the posts concerning and at least one other

whose name I forget who claimed to have both Nf1 and NF2, I know that

was very hurt by some of the posts!

Speaking of , has anyone heard anything recently from her? The last

I saw was a post that for some reason the dr. who had agreed to operate

on some of her tumors wasn't going to be able to.

Hugs, ie who will try to " round " the sharp edges better in her

posts

> There was some discussion about NF1 and NF2 some time ago but the intent was

> clearly not to make anyone with both NF1 and NF2 feel like an " outcast " .

>

> Some doctors claim it is impossible to have both NF1 and NF2. My feeling is

> that this is not true and some people may very well have both NF1 and NF2.

>