This is the Health Show, a presentation of national productions.
We hear an awful lot about awareness in healthcare.
The Breast Cancer Awareness campaign has over the years made a huge difference in the way
the public views the disease and how women look at their own bodies.
But there's another condition out there, one that millions of people are at risk for,
but have never heard of.
It's very hard to live with and certainly it's a big challenge to diagnose and to treat.
On today's Health Show, a look at Lupus.
We'll also spend some time with the family of caregivers and take a trip down the weight
loss yellow brick road.
Dr. Nina Sacks is away this week.
I'm Bob Barrett and this is the Health Show.
The month of May has been designated Lupus Awareness Month.
Bet you didn't know that.
The fact is that Lupus is one of those conditions that needs further awareness of the people
most at risk for developing Lupus.
Those age 18 to 34, 72% have never heard of Lupus.
Here to tell us more is Sandra Raymond, president and CEO of the Lupus Foundation of America
and Sandra, that statistic about Lupus Awareness is startling.
It's frightening really when you think about the people at highest risk not really understanding
what the symptoms are, what the disease is all about.
That is problematic definitely.
Well, let's get basic.
Let's talk about the disease.
What is Lupus?
Well, Lupus, we call it a cruel mystery because it is an autoimmune disease that can affect
any organ system in the body.
So the joints, the kidney, the brain, the blood system, etc.
It's very, very difficult to diagnose.
It's very hard to live with and certainly it's a big challenge to diagnose and to treat.
We don't really know what causes this disease.
We know what triggers it, but we don't know what causes it, do we?
Well, we don't know what causes it and we really don't know a lot about the environmental
triggers.
So, someone with, you know, we have a genetic component, we have an environmental component.
So someone who is predisposed genetically and that may mean that there's a family history
etc.
We don't know which trigger in the environment may in fact cause Lupus to develop.
So it could be an allergy, it could be something in the air, something that they're eating.
We really don't know what it is that triggers the onset of the disease.
I've heard that sunlight can be a trigger.
Yes, it is a trigger.
It's definitely a trigger and we have many, many people with Lupus who absolutely cannot
go out in the sun, it does act as a trigger.
What would a doctor have to see in a patient that would make him think, you know, this might
be Lupus?
Well, you know, that's so interesting that you say that because we're working to, we're
doing continuing medical education programs for doctors across the country and we want
the disease to be on their radar.
So we want them to look at a patient who has common symptoms and you know, these are symptoms
that could be any disease.
So for example, joint pain or extreme fatigue and I'm talking about not being able to get
out of bed in the morning fatigue, flu-like symptoms of fevers.
These are all signs of many other diseases and so it's very, very difficult for a physician
to tease out that this could be Lupus but we want Lupus to be on their radar.
We want them to think, could this be Lupus?
Okay, when they have a group of symptoms that are causing problems but yet there's no
other disease that they can associate with it.
They don't see that happening.
So we want to get Lupus on their radar.
We want them to ask the question, could it be Lupus?
We want individuals to ask the question, could I have Lupus with some of these symptoms?
And you know, if they're persistent and they're, you've got flu-like symptoms but you
don't have the flu and you've been told you don't have allergies.
It's very, very likely that you may have an autoimmune disease and really you need to go
to a doctor who understands that.
And in our country today there are doctors called rheumatologists that are experts in this
disease and so they should seek out a rheumatologist who can tease out whether this is Lupus
or not.
Is there any kind of definitive test for this or is it just process of elimination?
Well, you know, there are, it's a combination of tests.
So there's no single test that can tell you you have Lupus but there are combination tests,
there are blood tests and urine tests and reporting of symptoms that can cause an expert in this
disease to ascertain whether this individual is Lupus.
In addition, if there are kidney issues, they can do a biopsy and determine whether it
is Lupus.
Once it's been determined a patient does have Lupus, what are the treatments?
I'm sure since there are no two cases of like there are no two treatments alike.
That's absolutely correct.
You know, up until last year or actually March of 2011, there had not been a treatment developed
for this disease since the disease was recognized in the mid 1800s.
It sounds really incredible but that is true.
The first medication ever aimed at this disease specifically was approved by the FDA in March
of 2011.
That's the first drug ever aimed at the disease and the first drug approved by the FDA in
almost 60 years.
So prior to that, for example, things like steroids and aspirin and all kinds of drugs
that were on the market for other diseases were being used and were being experimented
with.
In other words, doctors were trying things trying to get symptoms under control.
So we have this first new drug in March of 2011 and now we've got interest from multiple
pharmaceutical companies in the development and the research and development of new treatments.
End of these drugs are the one drug that's out now.
Is that just aimed at preventing a flara?
Well, it's even more narrow than that in the sense that it's good for certain patients.
We don't even know the clinical experience yet.
So it's good with certain patients and other patients, it doesn't work as well.
So no one drug is going to work well in all patients.
We need an arsenal of treatments for lupus because it is different from person to person.
We know there is a genetic component.
Is there any kind of, do we pinpointed what that gene is or is it just still test going
on in that?
Well, we pinpointed it over 30 genes, but what we haven't been able to do is draw the
direct link between that genetic discovery and a manifestation of lupus.
So we've pinpointed some genes over 30 that have some relationship to lupus, but we have
not been able to determine what that relationship is yet.
Well your group of course has a big hill to climb since there is so little awareness, especially
in the group that should be aware of it and doctors too.
So what are you doing now?
I know, May is awareness month.
What's going on?
Well, you're right, May is a national lupus awareness month.
We have events going on across the country from educational events for patients, educational
events for physicians.
We have our 45 foot purple bus, which is a bus that we've outfitted with kiosks inside
to educate the public and others about the disease, what it is to live with lupus.
That's traveling across the country.
We have a very proactive outreach to the media.
We have a petition during lupus awareness month petitioning the federal government for
new research funds for lupus research.
We can go to lupus.org, sign our petition, which we would love everybody to sign that
petition because we really need these dollars for research.
That's where we're going to find the answers.
That's how we're going to give hope to people with the disease.
So there's lots of activity going on.
Well you've been involved for a while.
You've seen how far you've come till now.
Where do you hope to be in 10 years?
Well in 10 years what I really believe is that we can begin to bring this disease under
control at least.
If we're not curing it, we're bringing it under control with new medications, combination
medications.
Our goal is to see to it that people live a high quality of life with this disease, with
this chronic disease.
And we foresee that doctors will be better educated.
Individuals who are at high risk will be better educated.
There will be earlier diagnosis so the disease will not be allowed to progress and the symptoms
will be brought under control by new medications.
That's where I see us in 10 years.
Sandra Raymond is president and CEO of the Lupus Foundation of America.
You can learn more at lupus.org.
Until to come a young man with special needs becomes the caregiver in the family.
That story's next on the health show.
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I'm Bob Barrett.
John Joyce is an artist, a son and a brother.
John also has Down syndrome with the support of his family, especially his mother.
He's created a full and unique life.
Now facing the reality of her aging and continuing health problems, John offers her the support
and care she provided him with for so many years.
Colleen Udis reports.
John Joyce is playing a game of checkers in his living room.
This has been a nightly tradition for John since he was young.
He plays checkers most evenings with a worthy opponent.
My name is Doris Joyce and I'm Johnny's mother and I'm 94 years old.
I play checkers with my mom.
He's also good to make me play games and they keep me from being bored.
I beat her and she lost it.
I'm giving that to her.
John has Down syndrome.
At 53 years old, he spent his entire life living in Boat in his main with his mother.
John is about 5 feet tall.
He wears a black fanny pack and thick framed by vocals, the kind that tint in the sunlight.
He grew up in a household where he was treated no differently because of his disability.
Today, as an adult, John is a successful artist and leads a fairly independent life.
He has a job, he plays racquetball and he goes bowling on Fridays.
Yet, he needs some help and supervision with everyday things like cooking and taking
his medication.
It's been difficult in the fact that John doesn't seem to understand time.
He has a hard time getting up in the morning and getting what he needs done.
That's Dan Joyce.
He's John's older brother.
Dan moved in about two years ago, after doors broke her hip and began having more and more
health problems.
John is an artist that spindle works.
It's an art center for adults with disabilities.
It's nine in the morning and John is working intently in a small area he calls his office.
His radio is tuned to an oldie station.
His desk is cluttered with paint brushes, markers and notes about mixing paint colors.
Pictures of friends and family hang on the wall.
Today, John is working on a portrait of Elvis Presley, his favorite musician.
I've been spending a lot of work for 30 years.
I enjoy it.
I have a big voice.
Around 10 in the morning, John usually takes a break from his artwork.
On his own, he goes into town for a coffee break and snacks on peanut butter cups and
peppermint patties.
John was born in 1954.
During a time when it was common for children with Down syndrome to spend their lives in hospitals
or special institutions, John's family disagreed with that approach.
We put the idea of institutionalizing them was not a good idea at all.
Our family didn't think John was a good candidate for that.
He had the ability to learn.
He was a contribution to the family.
He was fun to be around.
We had a lot of joy with John.
John never had a formal education.
The school wouldn't allow him to attend because of his disability.
John's mother Doris realized his potential when he was a young boy.
I started a private kindergarten, my back room.
He had a blackboard made.
I took in half a dozen children for kindergarten class.
He'd be playing with blocks on the floor.
Well, I was working with the other children.
I put an A on the board and nobody seemed to know what it was, but he piped up and said
A.
He could read anything he wants.
He'd just buy more than he own kinds of things.
John's mom may have taught him to read, but John is a self-taught artist.
Back at spindle works, John squirts yellow paint onto his palette.
He adds a drop of brown and mixes it.
He's using a very small brush to paint the final details of his Elvis painting.
John is serious about his art with good reason.
Project manager Liz McGee says most of his art pieces are commissioned by people who are
interested in his work.
There's an incredible honesty to the artwork here.
And paints and draws just what he feels, what he's feeling right inside.
It doesn't go through any filters.
He paints about his passions.
He paints about his heroes and nothing gets in the way of that.
And for him too, there's a lot of humor in his art.
But I think that's what's appealing to many people that it is very raw.
It's not edited.
It's just from the heart.
He's had a tremendous amount of success here as an artist.
People would come in and say, can you do a painting of me as superhero?
Can you do a portrait of Stevie Wonder for me?
Everything was driven by people coming and begging to have his work.
So in my mind, if you've got fans asking for your work, that's pretty exceptional.
John ends every day back at home with his family.
While Dan is cooking, John usually sets the table for dinner.
After dinner, John takes care of his aging mother.
It's going to put a lot of drops in my eyes, because I can't do it myself.
I don't think.
This nightly routine is likely to change.
Doris is 94, and the Joyce family is well aware of her increasing age in declining health.
Children grow up, and usually they leave home and start life separate from their parents.
John grew up, but he never left home.
His mom has been a part of his everyday existence his entire life.
So losing her will be especially devastating for him.
I know that one of the concerns we have for John is that, and perhaps all of us are going
to be, we know we're going to be hurting when we see the passing of our mother, but John
is probably going to be the most affected.
He does have a special love relationship with her.
He's very loving.
He's helped me do anything.
Doris tilts her head back, looks up at the ceiling, and pulls down underneath her eye.
John hovers over her, and with steady hands, carefully places two drops in each eye.
Love is something that no matter how much you give it away, you can't give it away completely.
It just keeps coming back to you, and the more you love, the more love you get.
That's one of the principles that people need to learn about other people.
If you invest in them, then you'll get the dividends.
John's mom won't always be around.
He won't see her every day after work, and the checker's games will stop.
But that part of life hasn't happened just yet.
And today, John can still give her a kiss until she's beautiful.
For Salt Radio, I'm calling you this.
Dorothy had her hands full on her trip to Oz, but was able to prevail with the help of
her friends.
But as our friend Sandy Daigler reminds us, she never had to stare down a double chocolate
cheesecake.
Sometimes, as I venture along the path of my new slender life, I feel like Dorothy exploring
the wonderful world of Oz.
But if you recall, Oz wasn't all cute, colorful little people in yellow brick roads.
Oz was also a place with lots of dangers, and certainly there are many perils out there
trying to trip me up in my struggle to maintain my weight loss.
Except that instead of lions and tigers and bears, my scary encounters are with a different
kind of foe.
I'm sure you know exactly what I'm talking about.
Pasta, potatoes, and bread, oh my!
Now I can eat extra portions of some foods without fear.
Fish can be gobbled with a bandon.
A glass of wine is fine.
I expect I would explode before excess broccoli caused me to put on even one additional ounce.
Yet, a bite of bagel, a nibble of noche, the slurping of even a few slivers of fettuccine,
all of these acts can have only one result, the immediate gain of three to four pounds.
It is as if these foods contain pure fat cells, compressed into an aerosol like container,
each two second spritz expanding to many times its original size when exposed to the air,
or my stomach.
It's a cruel situation.
It would be less unkind if these foods weren't so ubiquitous.
I recently went to a business seminar that built a box lunch among its many benefits.
If you are among the weight challenged, you know that box lunch is a code phrase for,
this food will make you fat.
Perhaps boxing lunch would be a more accurate term, since what was contained inside was a
one-two punch.
There was a sandwich of course, an ounce of turkey and one leaf of lettuce squished
between two thick slices of bread.
Potato chips, a plastic cup of pasta salad, chocolate chip cookies, a carbohydrate bomb,
just waiting to explode on my hips.
Why did no one tell me this?
Even whole wheat and brown rice have this effect on me, and these foods are cited as examples
of healthy eating.
The food pyramid, touted with such authority by the U.S. Department of Agriculture, recommends
that a woman my age eat about five servings of grains every day.
Are they high?
I can handle maybe half that without bloating up, and that's only if I keep running regularly.
There is no time of year that's safe from the attack of the carbs.
During the winter holidays, cakes and cookies abound.
In the spring, new potatoes and berry tarts in flaky pastry shells are all the rage.
What would summer be without mayonnaise drenched macaroni salad?
Fall brings the ultimate carbohydrate orgy, thanksgiving with its bread stuffing, all manner
of mashed spuds, warm rolls, and of course pie, apple, pumpkin, mincemeat.
You name it.
Doesn't everything taste better when it's baked in a pie crust?
I'm feeling quite depressed about all of this.
When I watch ads for weight loss programs on television, Jennie Craig, Nutra System,
E-Diet, what do they all promise?
That you can eat delicious foods like lasagna, spaghetti and meatballs, muffins.
Yes, you can eat these wonderful comforting foods and still lose weight.
They lie.
Or perhaps they don't lie.
Maybe you can eat these foods and lose weight.
But my friends, you cannot eat these foods and maintain a weight loss.
It's been my experience that for every carb drenched indulgence I allow myself, a week
of diet and exercise penance must follow.
In the Wizard of Oz, Dorothy was nearly done in by a field of poppies.
For me, it's poppy seed bagels.
No matter how much I wish it were otherwise, I do not live by bread alone.
I do not live by bread period.
I'm not happy about this.
But if it's a choice between a fat panini and skinny pants?
Well, I know which one I choose.
Sandy Degler is a writer and architect living in Troy, New York.
You can read more of Sandy's work on her blog, One Little Cookie.
That's all the time we have for this week's health show.
If you'd like to listen again, join us online at healthshow.org.
You can explore the archive or any programs you might have missed or would like to hear
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You can also subscribe to our podcast.
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And if you have any questions or comments about the programs, send them in.
Our email address is letters at healthshow.org.
I'm Bob Barrett.
Stay healthy and be sure to join us next time for another edition of the health show.
Dr. Nina Sachs is a practicing member of the American College of Gastroenterology.
Bob Barrett is producer of the health show.
Dr. Alan Shartock is executive producer.
The health show is a presentation of national productions, which is solely responsible
