Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

[Guest guest]

We have had our share of bickering and hurtful words in this group too, but mainly from a few people who left, at least one was removed involuntarily. But overall I think we depend more on support and friendship than other groups do. That makes us tighter and closer.

I've never joined an NF1 group, but we used to have NF1ers in our NF2 group prior to the Crew and I could not relate to the NF1 people. That particular NF1 group slowly left us cuz their, I don't lmow, complaints, search for sympathy, whatever... wasn't working with a group of NF2ers who had to deal with a lot worse. I'm glad their are separate support groups. I mean, you wanna be nice and understanding to everybody, but its tough to listen to a woman say she cried all day after learning that her 12 yr old had a learning disability from NF1 after you just had a friend die at the age of 25 from NF2.

-Pat

[Guest guest]

I think only one person was removed involuntarily. Paranoia played a

big part in that removal. He was afraid our secrets were going to

get out and was generally just harrassing Carla. I'm not sure what

secrets he was worried about.<G> I don't mind ppl with NF1 being in

this group if they have similar problems and will blend in with

everyone else. As Pat said, they usually end up leaving because they

don't fit in.

na <--Back from Vegas and exhausted

> We have had our share of bickering and hurtful words in this group

too, but

> mainly from a few people who left, at least one was removed

involuntarily.

> But overall I think we depend more on support and friendship than

other

> groups do. That makes us tighter and closer.

>

> I've never joined an NF1 group, but we used to have NF1ers in our

NF2 group

> prior to the Crew and I could not relate to the NF1 people. That

particular

> NF1 group slowly left us cuz their, I don't lmow, complaints,

search for

> sympathy, whatever... wasn't working with a group of NF2ers who had

to deal

> with a lot worse. I'm glad their are separate support groups. I

mean, you

> wanna be nice and understanding to everybody, but its tough to

listen to a

> woman say she cried all day after learning that her 12 yr old had a

learning

> disability from NF1 after you just had a friend die at the age of

25 from

> NF2.

>

> -Pat