Re: Digest Number 918

[Guest guest]

Hi, Debbie,

>i just remembered - i think i remember reading somewhere, years ago,

>probably during the 80's, something about when they do " typing " for

>organ donors/recipients, there's 4 " factors " they match on - and we

>(cfs/me) patients are all in the same " group " - anybody know any more

>about this?

That would be big news to me. You are talking about HLA typing; each person

inheritsw two genes from each parent and expresses them all, so can have up

to 4 markers on each cell. Sometimes two genes are coincidentally the same

so only 3 markers are shown.

There are over 60 different kinds of HLA markers (and that was a while ago -

could be over 100 now for all I know). The chances of finding two unrelated

people with a 4-marker match is one in some millions. There is no way that

every CFS patient has the same 4 markers (if that were the case we would be

a lock on getting transplants, with close to 1M potential donors out

there...)

It is possible that all PWCs share one HLA marker. But even that would be

unusual enough that it would be big news, and be repeated all over. What is

more likely is that those who have one HLA marker get CFS at a higher rate

than the 'general population'. That is similar to the linkage of

atherosclerosis with one cell marker. But that leaves open the possibilities

that a) a person with this marker will not get CFS, and people without

this marker will get CFS.

Jerry

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

I haven't heard about this conference!!! Could you point me in the right

direction for getting information on it? I would REALLY appreciate it!

-

From: ANGELO5@...

Subject: Re: Pat yourselves on the back

, thanks so much for your letter, it IS sooo encouraging. I have a 10

3/4 yr old daughter with OCD and I too have it but never diag. nor

treated just learned how to cope. It too runs in my family, grandma on both

sides, my mom and her 3 sisters 2 of my cousins etc etc. Your words of

encouragement are much needed and for that I am very greatful. Are you

planning to come to the conference in Denver? and I will be there. I

know that there is no way she would be doing so well now if we wouldnt have

gone last year. The info was invaluable.

Thanks again,

Nikki in Otown

[Guest guest]

Hi , The conference is 7/19through 7/22 in Denver. You will be able to get info from the OC FOUNDATION but they do not have it up on their website yet so I think they are still working on details. Last year was in Chicago and the info that we received was invaluable, the best move I ever made since this diag almost 3yrs ago. I hope you can go I would really look forward to meeting you. Nikki in Otown

[Guest guest]

I am new to this group. As I read all the letters I came across the

subject of a conference in Denver this July. I would appreciate any

information. It would be of interest to me. thank You

Lydia

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[Guest guest]

HI Lydia:

Welcome to the group. THe OC Foundation (http://www.ocfoundation.org)

holds an annual conference every summer with speakers and workshops on a

wide variety of OCD- and related topics. OUr family has been attending

since 1998 when it was held in St. Louis. We dxed our son with OCD in

October 1997 and it took me until July 1998 to introduce him to another

person with OCD that had been successfully treated. It was a wonderful

experience for him to meet others in the same situation. His enthusiasm

for the kids' activities was wonderful and it helped him be more motivated

about getting treatment and persisting with tough CBT.

It was also a very good experience for my husband who started to learn

about OCD in earnest. Before that time he would not read and only watched

OCD videos when I demanded it. There were a number of very positive

presentations and this helped him tremendously with his grief about our Steve.

Last year and I, together with some of the other list moderators ran

a support group for parents with children of all ages with OCD and other

alphabet soup. Several of us will be doing presentations and developing

events like a support group for the parents again. There is increasing

focus each year on programs for our kids. I hope you can make it to Denver.

Last I checked the web site was not yet updated with conference information

as the OCF conference organizers are still finalizing the program this

month. HOpefully things will soon be out. Take care, aloha, Kathy (h)

kathyh@...

:37 PM 03/12/2001 -0800, you wrote:

>I am new to this group. As I read all the letters I came across the

>subject of a conference in Denver this July. I would appreciate any

>information. It would be of interest to me. thank You

> Lydia

>

[Guest guest]

Was wondering with all the research they've done on

our kids if they've done a research on how much this

has aged the parents. My husband has less than usual

and mine is in need of some color to cover the gray!

lol I don't know about some of you guys, but lately

my husband I feel like we've aged 10 years in 2 these

days. *sigh* Just feeling a wee-bit overwhelmed this

week. Take Care & God Bless.

Love,

Tammy

--- wrote:

>

[Guest guest]

Hi Tammy,

I too look in the mirror and see effects of the stress

in my face and have found many new gray hairs. The

stress is hard on us and I believe it definately

takes a toll on our bodies, but I do know she is worth

every wrinkle and gray hair, so when I find a new one

I just smile 8-). Suzie

--- pablo cruise <nikki228@...> wrote:

> Was wondering with all the research they've done on

> our kids if they've done a research on how much this

> has aged the parents. My husband has less than

> usual

> and mine is in need of some color to cover the gray!

> lol I don't know about some of you guys, but lately

> my husband I feel like we've aged 10 years in 2

> these

> days. *sigh* Just feeling a wee-bit overwhelmed

> this

> week. Take Care & God Bless.

>

> Love,

>

> Tammy

> --- wrote:

> >

[Guest guest]

Though this topic is a bit tongue in cheek, I can soundly profess that my hair

has thinned ALOT since Skylers diagnosis over two years ago! Fortunately I am

over 6' tall so few can see it unless I bend down.

};-)

Re: Digest Number 918

Was wondering with all the research they've done on

our kids if they've done a research on how much this

has aged the parents. My husband has less than usual

and mine is in need of some color to cover the gray!

lol I don't know about some of you guys, but lately

my husband I feel like we've aged 10 years in 2 these

days. *sigh* Just feeling a wee-bit overwhelmed this

week. Take Care & God Bless.

Love,

Tammy

--- wrote:

>

[Guest guest]

Tammy

i aint sure if theres a research on this BUT

i know my sister next to me dont have any kids and is married

and at the age of 36 shes half grey and half brown hair

shhhhhh that means i am doing good i have 2 kids and married and

aint got much on the grey lololol melissa jerks them out

but i will grow grey gracefully lolol each grey will be from some part of my

life i worried over wondering about next year

Robbin

[Guest guest]

Suzie

so right

i look in the mirror run the comb through my hair and leave it

i dont stand and look

but i did last week no winkles yet lolololol

stress will get you down it will make you feel rough

laugh some cry some dont hold it in

laughing is best i am always doing something for a laugh

i watched steel magnolia yesterday and its so much a sad movie but its also

funny

i had seen it before and knew when you not listen so close but also knew when

the funny part was coming up

the sad part was almost like my mom she passed away at the age of 53 of

diabetes

complications and MERSA then the funny part came on where whizzer was going

to get slapped lolololol the bad part was i would be the one makeing them

laugh also

mom was gray headed with alittle of her red hair lololol

life is so short not to have fun anyway you can if a person is serious all

the time

you become more stressed more tensed up and cant relax and be happy with

what a person has thats why i am trying to let melissa see even though we

have a road block sometimes we know theres something on the other side its

just getting over the block lololol jumping or climbing it

Robbin

[Guest guest]

Hi Tammy,

I loved that message I never noticed any grey hairs until Josh was

hospitalized during the onset of his JRA. I came home from the hospital

to have a shower and change and while combing through my wet hair I

noticed one that sparkled That was almost 6 years ago and there are a

few more these days ... but I feel comfortable with them. I do know what

you mean about the added stress though, when our children aren't doing

well. I hope this week will be a much better one for you

Aloha,

Georgina

suzie s wrote:

>

> Hi Tammy,

> I too look in the mirror and see effects of the stress

> in my face and have found many new gray hairs. The

> stress is hard on us and I believe it definately

> takes a toll on our bodies, but I do know she is worth

> every wrinkle and gray hair, so when I find a new one

> I just smile 8-). Suzie

> --- pablo cruise <nikki228@...> wrote:

> > Was wondering with all the research they've done on

> > our kids if they've done a research on how much this

> > has aged the parents. My husband has less than

> > usual

> > and mine is in need of some color to cover the gray!

> > lol I don't know about some of you guys, but lately

> > my husband I feel like we've aged 10 years in 2

> > these

> > days. *sigh* Just feeling a wee-bit overwhelmed

> > this

> > week. Take Care & God Bless.

> >

> > Love,

> >

> > Tammy

[Guest guest]

I too believe laughter is the best medicine. Chrissy

and I are always cracking up. Hey have you ever made

puppets with the rubber gloves in the doctors office.

I dance, sing , bootie slap and everything to

entertain her when we are in the hospital and at the

doctors. The nurses think I am a nut but I don't

care, It makes my angel smile during the worst of

times and thats whats important most. I even had one

doctor walk in when I was bootie-slapping, telling

chrissy I would love to go to the next school dance

with her (hahaha) and the doctor said this child is

laughing she isn't sick. Well what do you expect for

the emergency room.

Hugs Suzie

--- Robbin40@... wrote:

> Suzie

> so right

> i look in the mirror run the comb through my hair

> and leave it

> i dont stand and look

> but i did last week no winkles yet lolololol

> stress will get you down it will make you feel rough

>

> laugh some cry some dont hold it in

> laughing is best i am always doing something for a

> laugh

> i watched steel magnolia yesterday and its so much a

> sad movie but its also

> funny

> i had seen it before and knew when you not listen so

> close but also knew when

> the funny part was coming up

> the sad part was almost like my mom she passed away

> at the age of 53 of

> diabetes

> complications and MERSA then the funny part came

> on where whizzer was going

> to get slapped lolololol the bad part was i would be

> the one makeing them

> laugh also

> mom was gray headed with alittle of her red hair

> lololol

> life is so short not to have fun anyway you can if

> a person is serious all

> the time

> you become more stressed more tensed up and cant

> relax and be happy with

> what a person has thats why i am trying to let

> melissa see even though we

> have a road block sometimes we know theres something

> on the other side its

> just getting over the block lololol jumping or

> climbing it

> Robbin

>

__________________________________________________

[Guest guest]

SUZIE

lolololololololol you have me laughing lolololol

i have done this with melissa

we make balloons with the gloves and play ball lolololol

i always keep the door open and we try to keep it low in laughing but when

we play

its so funny the dr and nurses have known me for years lolol

and they know i am nuts most times

melissa loves to piddle with things also

she will cut the lights off and lay down then she will say play ball

we have alot of fun and thats something i enjoy

its bad when melissa gets water in the glove and blows it up and we start

playing

then the glove busts and water goes everywhere lololololol

all i say is your in TROUBLE and we laugh

a kid has to have fun and laugh gets the mind off things

melissa will make the fart sounds and it echos lololol i am not sure if its

the real thing or not and walk out the door

lololololol

Robbin

ok i ADMIT i am NUTS or totally CRAZY but as long as it makes melissa laugh

and hapy i am doing what i enjoy lolololol

[Guest guest]

Pat..

Yeah originally GP thought may be a bone spur.. have appt next week to check it

out.. but this week .. have appt with the gynecologist.. pap smear came back

not right so doing a Colposcopy.. microscope inside to look at the cervix.. i

guess.. .. i have been so upset last week.. does this mean cancer possibility in

cervix.. sheesh.. what more can i get thrown at me...

Dawn

Message: 13

Date: Sun, 2 Jun 2002 12:58:13 -0500

From: " " <patriciajean@...>

Subject: Re: Digest Number 912

Dawn,

Check into heel spurs, my sis had them and had to

have surgery on one. Bone or cartiledge grows on

the heel and pokes into the tendons (layperson's

discription, tryin to sound smart

alley

My message to you: Don't worry, be happy!!

Love to hear from YOU!

Dawn

---------------------------------

[Guest guest]

Dawn,

I hope it's ok. Maybe nothing but good to check it out.

let us know!

alley/pat

[Guest guest]

Hey Dawn,

" not right " is a pretty vauge discription of your pap results!

However, don't panic! It is much more likely to be something

non-serious. It doesn't automatically mean you have cancer. Also,

cervical cancer is very curable when caught early. I know it's scary,

I had an adenocarcinoma in my cervix (my pap smear was 'normal' by

the way!) that went to stage 3 before it was caught. I did have to

have a radical hysterectomy, but that was in Jan., 1995, and here I

am, cancer free.

Good luck!

Claudine

--- Curlykew <curlykew12@...> wrote:

have appt with the

> gynecologist.. pap smear came back not right so doing a

> Colposcopy.. microscope inside to look at the cervix.. i guess.. ..

> i have been so upset last week.. does this mean cancer possibility

> in cervix.. sheesh.. what more can i get thrown at me...

__________________________________________________

[Guest guest]

Dawn, I have had a couple of those not so right pap smears. I got sent to a

gynocologist. He did a procedure called a calposcapy. Basically, it took a

chunk of cervic to analyze closer. The results of that showed moderate

dysplasia (on the way to cancer). Then, they did another procedure shortly

thereafter called cyrosurgery. They froze the end of my cervix. It seemed to

have done the trick...it is now 14 years later and all my pap's have come back

normal.

By the way, neither one of these procedures was very pleasant at all. I hope

your dr. gives you a sedative or something. They gave me nothing.

Edie

Re: Digest Number 912

Dawn,

Check into heel spurs, my sis had them and had to

have surgery on one. Bone or cartiledge grows on

the heel and pokes into the tendons (layperson's

discription, tryin to sound smart

alley

My message to you: Don't worry, be happy!!

Love to hear from YOU!

Dawn

---------------------------------

[Guest guest]

Dawn...

Seems to me there was a previous discussion about how those of us with

Hep C seem to have other problems. They found skin cancer on Alley and

she is in treatment for that now.

Maybe since our immune systems are comprimised if we have the proclivity

towards any other diseases, they can grab hold. I don't know...just

guessing.

Good luck with everything. BTW, I saw your message aboout msm and am

searching through my document folder to see if I can find the paper I

wrote about msm and posted to the group. I no longer have the message

saved, but hopefully I can find the document.

Blessings

Tatezi

Curlykew wrote:

>

> Pat..

>

> Yeah originally GP thought may be a bone spur.. have appt next week

> to check it out.. but this week .. have appt with the gynecologist..

> pap smear came back not right so doing a Colposcopy.. microscope

> inside to look at the cervix.. i guess.. .. i have been so upset last

> week.. does this mean cancer possibility in cervix.. sheesh.. what

> more can i get thrown at me...

>

> Dawn

>

--

" It is in the shelter of each other that the people live. " ~Irish

proverb~

[Guest guest]

Hi. My name is Tammy and I am from New Brunswick

Canada. I too, am mostly a lurker on the list. I have

an 11 year old autistic sister. My family is having a

hard time with the school my sister attends.

I don't find that alot of

schools here are educated enough about autism. They

don't understand

the complexities concerning this disorder. I think

that teachers

should have to take special training in the area of

autism due to the

fact that the numbers continue to rise. I found that

most of the

teachers my sister has dealt with totally

misunderstands what she is

going through. They have often just wanted to send her

home because

they didn't want to deal with her. When she was in

elementary

school , they would call my parents saying she was

sick with a cough

and then when she was sent home my parents found

nothing wrong with

her. She is in junior high now, and she has greatly

improved in her

areas of speech and behavior, but there has since been

trouble with

teachers in her junior high school also. Three

teacher's aids held down my sister on the floor for

poking another child. Then they put her into a time

out room for over an hour and put a chair under the

doorknob so that she wouldn't get out. The thought of

the fact that they did this to my sister fumes me to

no end. They went way too far!!!! We are now in the

process of fighting with the school board to change

her school. My father has even been hung up on by the

head of the school board!!! I am fed up with the way

the school and the school board are dealing with this.

Has anyone else in the group had problems concerning

their child's

schooling? Has this happened to any of you with your

children? Do you find the teachers at your child's

school aware

and/or helpful? I appreciate your responses. Thank you

for answering

in advance:)And thank you for letting me vent.

~Tammy~sister to 11 years old and autistic

--- Autism_in_Girls wrote:

>

[Guest guest]

Well, Tammy,

When my son was being mistreated by his kindergarten teacher (a horrible

woman who informed me that " he only acts that way because you don't

discipline him " ) I finally removed him from the school and told them to find

him a better class. I refused to send him back to her after I learned that

she was being mean to him and after she sent him to the principal's office

as a " behavior problem " .

The school officials tried to bully me into sending him back to school until

they solved the problem, but I told them that I was doing hits, not only for

my son, but also for the teacher who was clearly not herself around my child

(art of diplomacy my mom practiced). I also pointed out, during the course

of several conversations, that Sherman was not learning anything in a class

where he was tied to a chair and sent to the principal's office for behaving

like a special ed kid (they hadn't figured out he was autistic yet).

Anyway, they left it alone and finally placed him.... a month later... in a

class of mentally handicapped kids. I was fine with that, even though we all

knew it was a wrong placement, because the teacher thought Sherman was the

cutest thing she ever saw and she was so happy to have a bright child in her

class, even if he couldn't talk (no offense intended to parents of mentally

handicapped kids - it is a different kind of bright).

Anyway, my husband tells me that parents have to treat the school officials

as though the parent is the employer and the school official is the

employee. The parent is in charge of every decision and can always say, " I

will home school my special child until you find proper placement for her. "

they hate that because they lose all the nice, pretty special ed dollars

that they get. They really start working their butts off to fix the problem

at that point.

Anyhow, it is just an example of how I handled a similar problem.

In your case, I would have my parents dropping words like " litigation " and

other scary words about locking kids in closets for an hour. The school

should be really terrified at this point and trying to placate your parents.

Hanging up on your dad was a big mistake! Your dad totally has the upper

hand now.

Good luck! and keep us posted!

Smiles!

wife to

mom to:

na, 14, NT; Marilla, 9, Autistic; Sherman, almost 8, Autistic; Greilyn,

2.5, NT

Re: Digest Number 918

Hi. My name is Tammy and I am from New Brunswick

Canada. I too, am mostly a lurker on the list. I have

an 11 year old autistic sister. My family is having a

hard time with the school my sister attends.

I don't find that alot of

schools here are educated enough about autism. They

don't understand

the complexities concerning this disorder. I think

that teachers

should have to take special training in the area of

autism due to the

fact that the numbers continue to rise. I found that

most of the

teachers my sister has dealt with totally

misunderstands what she is

going through. They have often just wanted to send her

home because

they didn't want to deal with her. When she was in

elementary

school , they would call my parents saying she was

sick with a cough

and then when she was sent home my parents found

nothing wrong with

her. She is in junior high now, and she has greatly

improved in her

areas of speech and behavior, but there has since been

trouble with

teachers in her junior high school also. Three

teacher's aids held down my sister on the floor for

poking another child. Then they put her into a time

out room for over an hour and put a chair under the

doorknob so that she wouldn't get out. The thought of

the fact that they did this to my sister fumes me to

no end. They went way too far!!!! We are now in the

process of fighting with the school board to change

her school. My father has even been hung up on by the

head of the school board!!! I am fed up with the way

the school and the school board are dealing with this.

Has anyone else in the group had problems concerning

their child's

schooling? Has this happened to any of you with your

children? Do you find the teachers at your child's

school aware

and/or helpful? I appreciate your responses. Thank you

for answering

in advance:)And thank you for letting me vent.

~Tammy~sister to 11 years old and autistic

--- Autism_in_Girls wrote:

>

[Guest guest]

Hi Tammy

My name is Tracey and I live in Ontario, Canada. I have two daughters

Coral, age 12 in July, and Skylar age 9 1/2. Skylar was diagnosed

autistic at the age of 3. It is awful what they are doing to your

sister. The poor kid. I do agree there are alot of people who just

don't understand autistm. We have been very lucky and my daughter

attends a great school. We live in a very small town where there is

really only 1 school or she could have been bused 15 miles to the only

other elementary school that is local. Luckily our school here has

been great. The teachers seem knowledgeable about autism and she has

been blessed to have the same E.A. for the last 5 years. They send

E.A.s and teachers to workshops on autism and provide her with a great

working and social environment. Because of this she has thrived at

school. I guess I just take this for granted and don't realize how

lucky we are until I hear stories like yours. I hope your father is

successful in getting your sister transferred and hope that she has a

better experience at her new school. All our girls deserve to have a

positive and pleasant school life. Good luck to your family.

Tracey

Tammy wrote:

> Hi. My name is Tammy and I am from New Brunswick

> Canada. I too, am mostly a lurker on the list. I have

> an 11 year old autistic sister. My family is having a

> hard time with the school my sister attends.

>

> I don't find that alot of

> schools here are educated enough about autism. They

> don't understand

> the complexities concerning this disorder. I think

> that teachers

> should have to take special training in the area of

> autism due to the

> fact that the numbers continue to rise. I found that

> most of the

> teachers my sister has dealt with totally

> misunderstands what she is

> going through. They have often just wanted to send her

> home because

> they didn't want to deal with her. When she was in

> elementary

> school , they would call my parents saying she was

> sick with a cough

> and then when she was sent home my parents found

> nothing wrong with

> her. She is in junior high now, and she has greatly

> improved in her

> areas of speech and behavior, but there has since been

> trouble with

> teachers in her junior high school also. Three

> teacher's aids held down my sister on the floor for

> poking another child. Then they put her into a time

> out room for over an hour and put a chair under the

> doorknob so that she wouldn't get out. The thought of

> the fact that they did this to my sister fumes me to

> no end. They went way too far!!!! We are now in the

> process of fighting with the school board to change

> her school. My father has even been hung up on by the

> head of the school board!!! I am fed up with the way

> the school and the school board are dealing with this.

> Has anyone else in the group had problems concerning

> their child's

> schooling? Has this happened to any of you with your

> children? Do you find the teachers at your child's

> school aware

> and/or helpful? I appreciate your responses. Thank you

> for answering

> in advance:)And thank you for letting me vent.

>

> ~Tammy~sister to 11 years old and autistic

>

>

>

>

>

> --- Autism_in_Girls wrote:

> >

[Guest guest]

Sorry I am unavailble until the 9th June, please contact Jackie McFadyen

for help or information tel 0141 848 3782

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