JRA

September 4, 2001

Can our kids get tested for this so we can know ahead of time? Now I am

worried about my 11 year old son. I know they say girls get it more than

boys, but now I worry about everything.

Anybody know of any tests?

Pat

September 4, 2001

when i asked about my other daughter being tested she said there were really

no reason at this time but i would know sooner because i had already been

threw the symptoms with my first one.. kellie & jessica 6 1/2 poly

September 4, 2001

Dear ZRL,

I know you are somewhat devistated by this diagnosis, but all I can say

is think positive hun. This child will grow and prosper well in a family that's

knowledgeable and caring, and he will have the benefits of the lessons that JRA

has taught us all. If it had to be something, at least JRA is treatable and he

will have you is Gran to pattern his life after. JRA vets have awesome

character, fortitude, strength , compassion, etc. and he will learn all these

qualities too. What better teacher than your grandmother, who's been there done

that lol! KEEP SMILIN ZRL :):) write us back and let us know your names

and where u are from! Tree:):):)

Theresa Sappenfield aka Tree

JRA pushin 40 lol

Louisville, Kentucky

JRA

Hello. I was diagnosed with JRA at the age of 13. I am now 47 and

still going strong although I have a lot of aches and pains. My index

finger on my right hand now does not bend all the way and my knees

are bad also. I refuse to let this disease get the best of me.I keep

active and swim a lot to help the stiffness. now my concern is with

my 11 year old grandson. He was just diagnosed today with the same

disease.I thiught that at age 11 it was uncommon to get JRA. I guess

I thought wrong. He has it really bad in his feet and sometimes he

cries cause it hurts him so bad. He never complains about anything so

when this started I knew something was very wrong with him.First they

thought it was his growth plates in his heels and that he was growing

to fast. Today the doctor took 3 tubes of blood and found the R

factor in his blood and made the diagnosis.I am glad we know what the

problem is but at the same time I know what he will be going through

as he grows up. I know parents and grand parents don't want to see

their child in pain and this is just killing me. I know what the pain

is like and now I know he will suffer with it too. I only wish there

was something I could do for him but I know there isn't.I only hope

some day they find a cure for this disease so no other people will

have to suffer with the pain.

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September 4, 2001

Thank you for your letter. A little support is just what I need right now.

It's just that I hate having to watch him go through the pain that comes with

this disease. We are supposed to be able to protect our children and grand

children. I know that he will be OK but the pain is killing me. Anyway we are

from Ohio. We live on the Ohio Indiana border. It's about 20 miles outside of

Cincinnati. My name is Zeta and my grandsons name is Zackary. Thank you so

much for your letter and your support. It means a lot to me.

September 4, 2001

They can do a blood test to see if your child has the R factor in his blood.

That is what they did for me when I was 12 and now I am 47 almost 48 this

October and I have rheumatoid arthritis. I got it when I was a child also. I

was 11 when I got it and they diagnosed me when I was 12. I am not in a wheel

chair and I still lead a pretty active life. Just a little slower now but I

think that has to do more with my age now. I still dance, swim, walk, ride a

Harley and anything else I want to do. Sure my body aches a lot but I refuse

to let it get me. Keep faith and you to will get through all this.

September 4, 2001

Well I'm not sure this is the way it's handled everywhere Pat but in Louisville

the childs pediatrition has to refer you to the ped. rhummy ! Sadly , I'm going

through this process myself with my 14 year old son. I would appreciate it if

everyone would keep us in your prayers, and hopefully our so called growing

pains are just growing pains! KEEP SMILIN' :):)Tree

Re: JRA

Can our kids get tested for this so we can know ahead of time? Now I am

worried about my 11 year old son. I know they say girls get it more than

boys, but now I worry about everything.

Anybody know of any tests?

Pat

September 5, 2001

Hi Zeta I too was diagnosed at 13 with jra and I am 45 oops I mean 46, I

live in Michigan , the Flint area. I to was plagued with foot pain a lot

in the beginning . It's a tough thing to watch a child go through this,

especially when you yourself know the missouri ahead of them. I would put

two Dr. Shoul's foot pads in each shoe for more cushion, didn't take the

pain away completely but it felt good for awhile!

Good people hear at this group and they are ready to listen.

Morse aka Rusty Limbs

On Tue, 4 Sep 2001 22:28:05 EDT ZLR1010@... writes:

> Thank you for your letter. A little support is just what I need right

> now.

> It's just that I hate having to watch him go through the pain that

> comes with

> this disease. We are supposed to be able to protect our children and

> grand

> children. I know that he will be OK but the pain is killing me.

> Anyway we are

> from Ohio. We live on the Ohio Indiana border. It's about 20 miles

> outside of

> Cincinnati. My name is Zeta and my grandsons name is Zackary. Thank

> you so

> much for your letter and your support. It means a lot to me.

>

September 5, 2001

RUSTY LIMBS keeping my fingers crossed for a positive outcome, every

crooked one of them and toes too!

Nothing but good thoughts and prayers!

On Tue, 4 Sep 2001 22:43:55 -0400 " theresa sappenfield "

<treesap0@...> writes:

> Well I'm not sure this is the way it's handled everywhere Pat but in

> Louisville the childs pediatrition has to refer you to the ped.

> rhummy ! Sadly , I'm going through this process myself with my 14

> year old son. I would appreciate it if everyone would keep us in

> your prayers, and hopefully our so called growing pains are just

> growing pains! KEEP SMILIN' :):)Tree

>

> Re: JRA

>

> Can our kids get tested for this so we can know ahead of time? Now

> I am

> worried about my 11 year old son. I know they say girls get it more

> than

> boys, but now I worry about everything.

>

> Anybody know of any tests?

>

> Pat

>

September 5, 2001

Well that makes you feel good. So we should just sit and wait?

Pat

September 5, 2001

And if they find it, do they wait till something happens or do they want to

start some sort of treatment? I guess I have more questions for my doctor.

Pat

September 5, 2001

We will do that.

September 5, 2001

Hi Zeta, my name is Barb and my son Chase, who is 8 yrs. old was diagnosed

with systemic jra in May. Chase's grandfather has had rheumatoid arthritis

for over 20 yrs and he also is very upset about his grandson having this

disease. My husband is also dealing with the heartache of having to watch his

father all of these years deal with such pain and now his son. I myself am

very relieved he has jra, because when his symptoms started, I was convinced

he might have leukemia. This disease is treatable and today Chase is pain

free, plays soccer, rides his bike and acts like any other 8 yr. old kid.

While I know he will have his ups and downs, I also know he will be a stonger

person from this because he has taught all of us so much in the short time

that he's had jra.

I am extremely blessed to have found this group of people here and I 'm sure

if you stick around you will feel the same. Best of luck to you, Zackery and

all your family. Sounds like he has the best support. Barb

September 5, 2001

Thanks Rusty it means alot! Tree

Re: JRA

>

> Can our kids get tested for this so we can know ahead of time? Now

> I am

> worried about my 11 year old son. I know they say girls get it more

> than

> boys, but now I worry about everything.

>

> Anybody know of any tests?

>

> Pat

>

September 5, 2001

Zeta,

My sister has rheumatoid arthritis diagnosed at age 21. So bad

that her 3 yr old son used to help her out of bed in the morning. Her

orthopedic doctor is saying it may have been juvenile onset.

(my daughter) has Pauciarticular (less than 4 joints) JRA. We are

fortunate that only had one joint affected and is currently in

remission. Welcome to the group. You will find alot of answers and

support here.

Teri

September 5, 2001

Hi, Zeta! I am Lynda, a 37 yk old JRA vet, and another newbie

to the list. I'm sorry to hear that your grandson has been

diagnosed with JRA. I remember, when I was a child, thinking

that I was the only kid in the world with aches and pains and

joints that didn't work like everyone else's did. Zachary will

be lucky to have you in his life. He won't feel alone, and, as

others have said, he'll have you to encourage and support him.

__________________________________________________

September 6, 2001

(((Tree)))) hugs to you and your son! My prayers are with you and hopefully

they are growing pains..the wierd thing is my son who will fifteen told me

that his legs have been bothering him..of course, I told him it was growing

pains..I do know he has pain in his knees sometimes..maybe I should get it

checked also..I learned with Tabitha it is better to be safe than sorry!

hang in there

karen (tabs mom)

From: " theresa sappenfield " <treesap0@...>

Reply-

" " < >

Subject: Re: JRA

Date: Tue, 4 Sep 2001 22:43:55 -0400

Well I'm not sure this is the way it's handled everywhere Pat but in

Louisville the childs pediatrition has to refer you to the ped. rhummy !

Sadly , I'm going through this process myself with my 14 year old son. I

would appreciate it if everyone would keep us in your prayers, and hopefully

our so called growing pains are just growing pains! KEEP SMILIN'

:):)Tree

Re: JRA

Can our kids get tested for this so we can know ahead of time? Now I am

worried about my 11 year old son. I know they say girls get it more than

boys, but now I worry about everything.

Anybody know of any tests?

Pat

April 25, 2002

Tammi.get in touch with your local arthritis foundation,they have monthly

meatings,and can get you in touch with other moms,there is also FACES which

is a great group.May is almost here and if you go to the arhritis walk in

your area,everyone gets a t-shirt and all the kids with arthritis get a blue

hat so everyone knows that kids get arthritis too.Supposed to be alot of fun

and alot of information.Our local walk is in Nashville Tennessee,and FACES

will be there,even though they dont have a chapter here,very much looking

farward to talking to them.Another thing is to talk to your rheumy,he can

help get you in touch with other moms,and there is JRA camp.Just a few things

to look into.Good luck. Becki and systemic 3

tskiemel wrote:

> Hi everyone,

>

> Can anyone tell me how to locate a local JRA group? I've read about

> some of you who do things like zoo outings and such and think it

> would be great to get involved with something like that. My daughter

> has JRA in L knee and R ankle for the last 9 years, and she

> would like to meet or talk with other kids who have it. It's not

> enough for me to tell her about all the other kids and their

> stories ... she'd like to talk with them too.

>

> Thanks for any help!!

> Tami =)

>

April 25, 2002

Hi Tami,

If you visit http://www.arthritis.org/ there's a box on the left side that you type your zip code into and it will help you locate the nearest local branch so you can find out about any of the scheduled activities they have planned.

Hope that helps,

Georgina

----- Original Message -----

From: tskiemel Can anyone tell me how to locate a local JRA group? I've read about some of you who do things like zoo outings and such and think it would be great to get involved with something like that. My daughter has JRA in L knee and R ankle for the last 9 years, and she would like to meet or talk with other kids who have it. It's not enough for me to tell her about all the other kids and their stories ... she'd like to talk with them too.Thanks for any help!!Tami =)

December 30, 2002

Dear Lori, Hi my name is theressa but most call me Tree! Your posting has me a bit perplexed. JRA as a diagnosis is only given to people with onset of arthritis before the age of 16 or 18 (somebody correct me If those ages are wrong but I believe 16 is closer to correct) Hence if you were just diagnosed at the age of 30 then your disease would be classified rheumatoid arthritis RA not JRA. I've lived with jra since the age of 3 and what you describe going on with your knee sounds rather normal for rheumatoid no matter what the age of diagnosis. How long have you been seeing this rhummy and what is his or her name. what criteria did the doctor use to decide that the knee and leg pain and swelling were not arthritis related...did you have a fall or and injury that might explain this??? Something sounds amiss and it may be that i haven't all the details. Did the doctor do labs and xrays during this visit or during a prior one?? what are the results of those tests? I have more questions than I have answers for you at this point I know, but sometimes this disease takes more questions and answers than you want to know or hear lol I sometimes feel like a slut on a case lol Dectective Tree at your service lol well it's getting late and my dryer won't quit buzzing me if I don't answer it soon so I'll turn in my badge for the night and will wait for a reply from you. In the mean time take care, use moist heat on that knee and try to stay off it as much as possible:):):)Keep Smilin:):)Tree:):) JRA Hey all,I Haven't been on here in a while though I read alot of your post to try to keep up to date with the JRA. a few months back I posted that I was a 30 year old adult recently diagnosed with JRA. I have been doing great with meds. till recently I have started haveing swelling in my left knee, makeing it unbarable to walk or to put any presure on my foot. I just returned from my visit with my Rheumatolgist at the University of Virginia and He tells me that the swelling and pain I'm having now is not from the JRA. That something else must be causing it. That if it were From The JRA it would appear in all of my joints not just one Knee. When I First started having symptoms a year ago it started in my Knees then Moved to other joints in months to come.Could this Be a relapse or could this infact be something else? I don't have alot of info on JRA in adults most things I have found has been in Children. If any Of You Might have some helpful info please send it to me. Thanks,Lori

January 1, 2003

lori

the JRA is juvenile rhuematoid arthritis the J being your was diagnoised before 16 years old the RA is a adult being 18 or older diagnoised with it

theres many types of arthritis though at least 100 and many blend into 1

my daughter has poly JRA with other symtoms shes on medication

to pin point the arthritis is hard which type and whats its symtoms are

Robbin

March 29, 2005

i have a website with my experiences dealing with it.. if she wants to use

that as a resource. _www.caringbridge.org/ca/lisaspage_

(http://www.caringbridge.org/ca/lisaspage)

Lots of love poly jra and spondy, 20

March 29, 2005

Dedra,

There are actually some good news stories affiliated with JRA. Our

daughter Allie is 8. We discovered this about 2 years ago, but I

believe she had symptoms years before that. Our daughter is a real

fighter, and fights thru the pain. She is a very active little girl.

She has missed zero days from school directly due to her JRA. She isn't

in remission, and doesn't even really have a good handle on this

disease, but she is very active. She is a dancer, and she plays ice

hockey (they were district champions) and she is on the verge of a

Freestyle 1 in figure skating. Her doctor attributes her nature and her

" toughness " in her ability to fight this disease. We believe she has a

very high pain tolerance as well. And to top that all off, she is in

the top 10% of her grade level! Not bad for a kid who takes a pill

every day, and gives herself a shot once every 2 weeks!

and Allie (8poly)

________________________________

From: Deadra Dunbar [mailto:fortheloveofmyson1998_5@...]

Sent: Tuesday, March 29, 2005 12:11 PM

Subject: JRA

Hello everyone. My daughter is doing a speech on JRA at her college. She

was wondering if anyone could help give input with some of your

experiences, the good and the bad. She is trying to raise awareness with

all forms of JRA. She wants to do a powerpoint presentation, and is also

interviewing Chase and how he deals with this disease. Anyone's response

would be extremely greatful. She has gone online and learned more,

because she says she can't list me as a resource, but she can this

website group. Thankyou again, one and all.

Deadra and Chase

__________________________________________________

March 29, 2005

Excellent see those are the stories that no one shares. I'm glad to hear it

sounds like a little trooper.

Ray <leslie@...> wrote:Dedra,