Re: JA Day- Long Post.. I'm warning.

[Guest guest]

, that sounds incredible and much like my first attendance to the AJAO in 1998. I was so overwhelmed and most definitely empowered. That is how and why FACES got its start! It is an incredible feeling to meet others who know your world! I had never met another my age until I was 32!!!! I am so glad you had such a positive experience and I agree you should do all you can to help, you are very inspirational and I know you can do it! keep us posted!!!!

H & S

Donna

[Guest guest]

Hi :

Sounds like a great day. That's great that you met another girl your age

with JRA and so many other children and adults who truly understand what it is

like to have RA.

Take care.

Patty

[Guest guest]

-Hi ,

Im so glad you had a awesome day. I bet you empowered the others you

met just as much as they empowered you.

You are such an amazing young lady.....

HUgs Helen and (6,systemic)

-- In , bncknwurnumber@a... wrote:

> I went to Juvenile Arthritis Day. It was awesome. I mostly

hung out

> with the 11-13 year old group because there was some other JRA vets

in there. I

> met a girl Karla who is 19 has Poly JRA and goes to my doctor.. I

was like hey

> look at that. She was super nice and I exchanged info with her.

This was

> the first time I have ever met kids with JRA outside of the clinic,

really my

> first time ever to talk to teenagers in person about having JRA.

It was

> empowering. I met this really neat woman who is 26 and

has connective

> tissue disorder and had some sort of rheumatic autoimmune disease

that attacked

> her muscles.. She was so empowering. She was telling me about how

she has

> dealt with the issues her disease has brought on, and it was so

cool. She told me

> how sometimes when she was in pain and she couldn't visualize it

away that

> she would think to herself this is an experience.. and take away

the pains

> power. I met this really cool guy Chet who is in his late

thirties.. who invited

> me to join the JA group that meets once a month. is in

the group and

> I was trying to convince Karla to join with me... was also

thinking

> that it would be neat to start a group for teens and early

twenties..

> also talks to groups on how to be positive despite the disease..

and she was

> wondering if maybe I would like to talk to them to, because she

thought I was

> positive about the JRA.

> I did listen to my doctor speak though and it was really

interesting.

> They were talking about the Anti-LA6 which they hope to start using

in systemic

> kids one of these days. At this point they are just testing it in

adults.

> Apparently though there is a clinical trial starting for CTLA-4

which is an IV

> infusion every four weeks. Humaria is also doing a clinical trial

and because

> it is not yet approved for kids they said that if a child gets

relief from

> the drug that they will continue giving it to them for free until

it is

> approved. Which means that a child who responds to humeria can get

it for free for up

> to three years. I thought that was pretty neat. She also was

talking about

> the new medicine Rituximab which has been used to treat severe ITP

and

> hemolytic Anemia that is being tested with RA. Oh yeah and I found

out in order to

> have a diagnosis of JRA you have to have swelling for 6 weeks to 3

months. The

> other interesting thing was the discussion about Bone Marrow

transplants with

> severely ill Systemic and Poly kids who have not responded to

medication and

> are just getting worse.

> One thing which I thought was a bit weird was one person posed

the

> question of Lymphoma and TNF inhibitors. At this point they do not

know if children

> with JRA can get lymphomas and whether or not the TNF inhibitiors

do cause

> some to get lymphoma.. all this I know. What I thought was weird

was my doctor

> said that she wasnt sure if someone developing lymphoma was exactly

a bad

> thing.. Because lymphoma is easier to treat then JRA.. Um really?

I would so

> rather have the JRA over Cancer. But that is my two cents.. All in

all it was an

> awesome day. The 11-13 group got to make shirts using some of the

Camp

> Milagros shirts (the local JRA camp.. Milagros means miracles).. So

I have a very

> cute Camp Milagros shirt that says JA Day on the back.. Sorry this

post is so

> long just wantd to tell people of my exciting day.

>

> Lots of Love

>

[Guest guest]

;I am so glad that you were able to attend. What an inspiring day and I am sure that all were so blessed to make your acquaintance as well.

I can't wait to get the agenda for the AJAO...I can't wait to see what kind of sessions they offer and especially what Rob will be doing.

and Rob 14 Spondy

On Sun, 4 Apr 2004 00:55:02 EST bncknwurnumber@... writes:

I went to Juvenile Arthritis Day. It was awesome. I mostly hung out with the 11-13 year old group because there was some other JRA vets in there. I met a girl Karla who is 19 has Poly JRA and goes to my doctor.. I was like hey look at that. She was super nice and I exchanged info with her. This was the first time I have ever met kids with JRA outside of the clinic, really my first time ever to talk to teenagers in person about having JRA. It was empowering. I met this really neat woman who is 26 and has connective tissue disorder and had some sort of rheumatic autoimmune disease that attacked her muscles.. She was so empowering. She was telling me about how she has dealt with the issues her disease has brought on, and it was so cool. She told me how sometimes when she was in pain and she couldn't visualize it away that she would think to herself this is an experience.. and take away the pains power. I met this really cool guy Chet who is in his late thirties.. who invited me to join the JA group that meets once a month. is in the group and I was trying to convince Karla to join with me... was also thinking that it would be neat to start a group for teens and early twenties.. also talks to groups on how to be positive despite the disease.. and she was wondering if maybe I would like to talk to them to, because she thought I was positive about the JRA.

I did listen to my doctor speak though and it was really interesting. They were talking about the Anti-LA6 which they hope to start using in systemic kids one of these days. At this point they are just testing it in adults. Apparently though there is a clinical trial starting for CTLA-4 which is an IV infusion every four weeks. Humaria is also doing a clinical trial and because it is not yet approved for kids they said that if a child gets relief from the drug that they will continue giving it to them for free until it is approved. Which means that a child who responds to humeria can get it for free for up to three years. I thought that was pretty neat. She also was talking about the new medicine Rituximab which has been used to treat severe ITP and hemolytic Anemia that is being tested with RA. Oh yeah and I found out in order to have a diagnosis of JRA you have to have swelling for 6 weeks to 3 months. The other interesting thing was the discussion about Bone Marrow transplants with severely ill Systemic and Poly kids who have not responded to medication and are just getting worse.

One thing which I thought was a bit weird was one person posed the question of Lymphoma and TNF inhibitors. At this point they do not know if children with JRA can get lymphomas and whether or not the TNF inhibitiors do cause some to get lymphoma.. all this I know. What I thought was weird was my doctor said that she wasnt sure if someone developing lymphoma was exactly a bad thing.. Because lymphoma is easier to treat then JRA.. Um really? I would so rather have the JRA over Cancer. But that is my two cents.. All in all it was an awesome day. The 11-13 group got to make shirts using some of the Camp Milagros shirts (the local JRA camp.. Milagros means miracles).. So I have a very cute Camp Milagros shirt that says JA Day on the back.. Sorry this post is so long just wantd to tell people of my exciting day.

Lots of Love