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Caitlin Ryan was just 3 years old when she was diagnosed with juvenile arthritis. Now, at age 14, she’s already had both hips replaced and lives wit...
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Yeah.
-- -- -- -- -- -- -- -- -- Ryan was just three years -- when she was diagnosed with juvenile arthritis now.
At age fourteen she has already have both hips replace and the pain she lives with is debilitating.
-- said today -- -- story along with doctor John Hardin who was vice president of research for the Arthritis Foundation.
Thank you both for being here I read a story and I have tell you my hero because.
You know the aged three to be diagnosed with juvenile arthritis.
You socially X rays both had replaced but.
Let me take you back to that period when you were three what was happening what you know.
How will you diagnose.
What was happening and and the family.
Well I a hat I was three so I don't you remember on the -- it by.
My parents have told me that we went.
That it took us awhile.
Communicate dying nose I went to numerous doctors and -- as.
It could be cancer.
It could be you know I could he muscular dystrophy could be a lot of things.
Days and then finally I was finally diagnosed with juvenile arthritis.
And my mom had -- You know my whole family had never heard kids getting arthritis too so.
Just that was a shock to our home.
So much but as you got older let's say when you were away when did you start understanding that you had arthritis because -- had joint pain -- -- you know.
I could see this patient three some of the symptoms you know he -- like flu like symptoms may be high fever whatever they didn't know what was going on -- While she got older and I utilities seven raid and now you know you got this arthritis in your body.
And how and how how did that affect you in general.
I mean when I started school was when.
I realize that I wouldn't be able to go play with my friends go out on the playground during a day or even do something as simple as right and no.
-- -- yeah because I had pain in my hands and it would hurt just to pick up a pencil.
So that's when when I started school -- when I realized that it was going to be there aren't a problem.
Doctor Harden you are and rheumatologist -- trade you work with the Arthritis Foundation you know let's tell folks out there you know because nobody thinks of arthritis -- something in the 60s70s -- ever.
Juvenile arthritis what is it and how does affect kids well like you Caitlin is my hero in our inspiration.
And fortunately there -- 300000.
Children across this country with -- juvenile arthritis.
The good news is that over the past fifteen years or so new drugs have been introduced.
And we can now do -- much better job of controlling this condition.
It's basically a disease that causes severe inflammation of all of the joints and sometimes systemic manifestations.
As well.
Now in her case H three.
-- three year old.
The child is not going to be able to tell you -- it hurts my knees hurt when I walked.
So one -- this some of these signs and symptoms especially because I think is important for parents.
To know that that this could be developed mostly at any age right in the infancy -- -- or five.
So what are some of the early symptoms of people -- should be aware.
Well the first thing that's a surprise to people is that everybody thinks of arthritis is a disease of older people right -- is actually a disease that affects people of all we aegis.
So the first thing is to be aware that it can happen in children.
Typically children don't walk up to you and say my knee hurts right what you notice is that the are limping they don't climb like they used to.
Activity is diminished.
Sometimes they have fever skin rashes and things like that all of these things can be quite confusing even to trained professionals.
So that's why we need pediatric rheumatologist.
Who real experts in this disease.
Who can work with these subtle clues to make the diagnosis and there are -- Let's -- specific tests that they can run to.
To kind of pinpoint that indeed you have rheumatoid arthritis well there are there are blood test that can be done that are helpful.
X rays can be helpful but by and large this is a clinical diagnosis that the position Meeks at the bedside.
From taking -- history examining the patient.
And then putting that together with the hole laboratory picture I -- let's get back to give us again you're the hero of the show.
EU get diagnose.
Now -- school you you know you got problems.
Talk to me about some of the treatments that you've received.
Law tirades I received numerous menace and -- and you know little things started to help me IA -- You know help -- messiah -- -- -- and.
Actually you you went a little bit in the alternative route to -- -- the -- -- A magazine now at all.
You have him on my -- aside -- tell you thank you -- decide that's right so I'm a member at a size and the and I also find peace and being with my friend's swimming and music.
OK that's great.
Now you had -- -- both your hips replace that's a big operation when did you get that done.
I got my first one done it -- eleven and that was my left hand and then at age twelve I got right.
And how -- our years it's now working well that actually you can you feel a full mobility in your pain free for the most part.
Let's talk a little bit about doc about did the research I know the you know it wasn't for let's say the Arthritis Foundation.
You know I think would be much worse than we -- today -- listen about some of the research has been done.
In into treatment of juvenile arthritis -- well when it.
The things we have to do is learn how to best applied to treatments that we help.
And so the Arthritis Foundation is sponsoring and whole network of sinners.
Called -- childhood arthritis and rheumatology.
Research alliance.
Ninety centers across the country together information own children with juvenile arthritis to help -- really understand.
Which is the best treatment for which person so that's a very important customized.
Care is plays a significant role absolute okay absolutely.
We also fund research grants that are designed to help us understand exactly what causes this disease.
What kind of genes are involved what kind of environmental factors are involved to set the disease in motion and these are things we -- Cutting edge science is now being applied and I'm happy to say that I think real advances are being made.
You think that it in some cases there is a genetic predisposition to this disease we do know that -- a genetic component.
We don't understand all of the genes that are involved yet.
It's particularly difficult.
To studied genetics and a disease that's -- that's relatively rare because you'd need many many patients in order to do that.
That's why this effort to develop national and international registries.
For juvenile arthritis and so important it.
What about you know war one feel that it's I think very exciting is the -- of regenerative medicine.
Told specifically in the field of stem cell.
-- -- you see any future there especially for you know only.
They re engineering of rusty joins yeah it's a huge future.
One of the first applications of stem cells I will predict will be to regroup cartilage -- I think that that is with in the visible horizon of our science we haven't mastered the technology yet.
But a lot of research is directed -- that.
Direction.
And the Arthritis Foundation is a major funder of stem cell research for helping to regenerate damaged joints.
-- -- -- -- -- -- -- Now what do you want people to know about juvenile arthritis and this is that this is your moment to talk about that to somebody who's young like you.
Who was going to may be through the same things when we tell people by juvenile places.
Well to people with arthritis I know -- hired that there is places you can ago people you can see things to do where.
It's just a place where everybody.
And can get together and talk about how they feel and yes it's hard in school -- not being -- to do everything and everybody else can do.
You just have to kind you know find your own way to live your life.
Right so so in other words don't be afraid.
Yes you got the disease but the disease doesn't have you yet this is certainly didn't get you right.
All right and you're also very involved with the with the foundation Narnia.
Bringing awareness to you know different people and tried to raise money for them and -- We like I said earlier I'm part -- I'm a member of massage and the and ARS -- nationals sponsor.
The Arthritis Foundation.
So every year they have a healing hands for arthritis -- on September 19.
So all of my family is going you can find them anywhere and look at the current.
Dot is there -- website that we should.
Referred folks to to WWW.
Arthritis dot org.
I would also like to emphasize the value -- -- -- that Caitlin mentioned you know part of what happens when you -- really painful joints and muscles go into spasm and that makes more pain.
Massages really good for the right and I'm very grateful to massages and be -- healing hands with the arthritis.
And their.
Efforts to support and research that foundation is caring known.
-- that's great.
Well listen again you're an inspiration age fourteen -- you know you gonna go places young woman and that's for sure and don't forget to sport also the Arthritis Foundation cause they sure do a lot of work and they put a lot of money into research and and probably.
Helping to eradicate this debilitating disease and thank you both for being here.
Patty they -- -- help -- you wanna talk to me about email me Arafat said doctor many functions not come until next time.
Conduct an --
