Crohn's Disease and why number of cases are growing
Dr. James Marion MD. and Rhondell Domilici are fighting the disease and so can you
- Duration 17:49
- Date May 11, 2012
Dr. James Marion MD. and Rhondell Domilici are fighting the disease and so can you
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Story want to talk about right now on this one has to do.
With two different.
Conditions that are together.
Sort of been a category that's known as inflammatory bowel disease and if you have watched this show before -- if you followed me you know that I have talked in the past about my own.
Situation having been diagnosed with Crohn's Disease about twenty or so years ago.
And there are a lot of people out there -- -- dealing with crohn's the -- for the colitis.
And we want to raise awareness and we want to let you know about a fund raising about that's not take place.
In New York City and perhaps where you live as well so we're very happy.
To say good morning and welcome to Rondell down -- -- Rondell.
Is the executive director of the greater New York chapter of the crohn's and colitis foundation of America.
She's a long time friend it's nice to see Rondo thanks -- coming in and doctor James Marion.
Specializes in gastroenterology.
And internal medicine and at mount Sinai correct correct which is really one of the leading hospitals and in the country when it comes to crohn's.
Treatment and and research and and we're glad -- -- -- -- Expertise as well.
Let me start with you doctor -- -- for for folks out there who may not know what Crohn's Disease -- -- -- of -- or inflammatory about these.
As a whole what they are what are -- Well there's two basic categories trick the first category -- -- with -- inflammatory bowel disease when you're talking about inflammatory bowel diseases you're talking about inflammation.
Which involved swelling.
And alteration for Crohn's Disease it can happen anywhere from the -- to the rectum.
All the way through the bowel wall it can produces symptoms of abdominal pain and diarrhea.
For -- -- the colitis colitis meaning inflammation that Colin you're really talking about just the cold.
In the most superficial layer lining of the colon that can produce more often urgency diarrhea and rectal bleeding and -- isn't saying this.
The viewers might be saying -- these are things that I simply don't talk about right and the problem with these symptoms are if you see something you've got to say something you know keep these things to yourself.
These diseases tend to show up in patients who were in their teen years initially.
But it can happen at any time in life so if you're having these symptoms.
Don't be shy you have to speak up what do we know about why people.
Get Crohn's Disease or -- -- The great press question right the the real issue with these diseases is that at this point we don't understand.
There essential nature we don't precisely know what causes but we have several clues we know for example that.
Crohn's Disease tends to run backwards in an identical twins this seems to be about a 50% likelihood of one -- -- that the other well that tells you that there is a genetic code behind behind this the problem is we have about a hundred candidate genes that this morning.
That's a lot and that's a lot to sit through and a lot of understanding that -- yet to come.
Clearly in the environment has something to do with it for example a fun fact about all for the -- although it's not so fun when you -- -- -- -- you quit smoking.
You're more likely to get all sort of colitis but at the smoke.
You're more likely to have Crohn's Disease really so clearly there's an environmental factor in this as well so it's genetic.
Producing immune dysfunction or hyper activity in the gut that produces the swelling and inflammation that brings -- and these conditions are chronic.
They are chronic.
And there lifelong.
And unfortunately there -- incurable with it's pronounced deceased -- that's all sort of colitis.
It's technically curable but only with surgery to remove the entire hole.
The good news is that they're treatable and control if you can get these patients to a team.
Sound remission of their condition.
Where the inflammation is down.
It's as if you don't have it.
So if it's managed well and the medicines do their job.
The patients -- managed carefully then yes you can get many patients to that but unfortunately they are chronic lifelong condition.
And are they.
Growing sort of in it in the -- incidences of people are more and more people.
Getting these conditions or are simply doctors becoming more informed and able to diagnose the better.
I think it's a combination.
There is greater awareness among positions than there used to -- Also the definitions of the diseases have changed somewhat so for example Crohn's Disease in 1932 when they first described it at mount Sinai chrome was a person he was a physician a gastroenterology.
Just before we can call them that.
Here on the upper east side of Manhattan.
He had a small group of patients who had just inflammation in the lower part of their -- Well now we know the Crohn's Disease.
Can have systemic effects they can affect anywhere in the GI tract.
It can affect the -- the eyes so our understanding of the disease has certainly broadened our definition has changed.
So the incidents I think is going up because of better education positions but also there is a sense that there's a genuine.
Gradual increase in the incidence of both conditions over time.
-- -- is as I said he's with the crohn's and colitis foundation of America and this is an organization that has chapters throughout the country.
Rondell runs the greater New York branch that it's here in New York City metropolitan area and this is an organization -- -- for me personally.
Was very instrumental when I was first diagnosed and had no idea what crohn's was.
-- doctor recommended I reach out to the crohn's and colitis foundation of America.
As a resource and and that is an and in addition to everything else that the organization does.
Being a resource to patients and to loved ones of people with these conditions.
Doubt that part of what you guys do is just is just unbelievable.
Yeah our mission is threefold.
-- clearly we are doing our best to fund research because ultimately we'd love to find a cure.
And the bank in addition to the research that we support on a regular basis.
We also are very involved in education support and advocacy for patients and their -- -- this is said disease.
That affects your entire life and and that really hasn't trickle down effect to family and friends as well.
Talk about the other parts of your mission though because.
And and doctor Marion alluded to this.
These are the kinds of conditions and symptoms that people typically don't.
Want to talk about and so a lot of times they you know they just don't you don't discuss these kinds of things in polite conversation.
And yet the crohn's and colitis foundation of America has really been.
A leader in terms of helping to start these kinds of discussions and get this kind of publicity so that there's more of an awareness here.
Absolutely and thanks to Fox News -- -- -- helping us to do that and I I believe these are really kind of silent disease is their diseases that patients are.
Fearful of talking about there's employment issues people are afraid to talk about -- networking case they have to miss work and -- A big part of our job is to raise awareness to try to get the word out educate people about what kinds disease -- -- -- -- And let people know that these are very serious conditions.
When you hear the symptoms says doctor -- discuss them because and only seem like it's such a big DL and I -- diet -- little pain -- -- so I'll.
It's really much more severe from many patients than that and there's many patients out there who cannot work -- disability.
Who have growth issues -- deficiencies to.
And at requiring multiple surgeries over their -- time.
I'm so we really do need to get the word out let people know that these are.
Chronic illnesses that affect the rest of patients' lives.
And see CFA is trying to do that as best we can with the retired education -- patients but also with the national programs.
Across the country that really try to raise awareness and let people know what's going on.
The one of those programs is an event that's coming up here in New York.
Next week this is the take steps walk.
That is always a fun event you gonna put that this is that this is the home page.
On the crohn's and colitis foundation America website where people can learn more about.
Take steps to tell us about this event.
So the take steps -- is and national events it's TC FD dies so wherever you're watching -- you can find an event near you.
And if you go to CC take steps that Larry you can find information in your local area this is a wonderful wonderful fundraising program that brings together patients and families.
There's no fundraising minimum so anyone can participate you can come out meet other people that you can talk to about the disease.
Especially if you are one of those patients has been very quiet about it this is great way to -- -- community of people where you can feel comfortable.
The money that's raised the money that strays I say the big big part event -- we have a goal to raise over eleven million dollars across the country this year.
And that goes directly to our mission program cents research education and support.
And really is a fun event and I know that they take place all over the place I would encourage you to check it out if you know of anybody and it's amazing doctor Mary once you start.
What you say to someone -- I have Crohn's Disease and it's a conversation I don't really offer it up just you know Willy Nilly that.
It's amazing to me how many people once I'd share my histories it.
Well I have a -- processes or I have and uncle across -- and everybody seems to know someone.
With an inflammatory bowel condition.
But I think the the one thing that the crohn's and colitis foundation does that I absolutely adore.
You mentioned it before you get a diagnosis.
People will you don't know what to do next there is an enormous amounts of really.
-- -- -- and information.
I call it a doctor Google consultation.
But -- -- global consultation.
Then takes the bewilderment of the new diagnosis.
Into treacherous landscape of too much knowledge too much information that hasn't been filtered.
With the crohn's and colitis foundation does is they provide information.
That has been carefully put together.
It includes skeptics like me and people -- don't necessarily agree with -- and we come up with.
I think -- -- a good sound start for folks to get their bearings straight after the diagnosis is made and then continue that relationship going forward.
As you mentioned -- people with Crohn's Disease and also the -- -- -- not sitting at home with -- bathroom.
-- live thing.
They're out there.
They're contributing to society these are active people the fact that -- take steps is part of it.
They're on their feet they're on the go and they're hoping and -- looking forward to a cure for these diseases.
This is not something that people are just think they just need to keep inside any longer so it's an inspiration for me is a position.
I want to ask you though because I know a lot of people are out there and they're listening to our conversation right now -- -- think you'll.
-- -- I have some stomach issues and I've had some of -- symptoms the doctor Marion mentioned a little while the does that mean that I have crohn's.
How do people know whether the symptoms that they're experiencing.
-- an actual.
You know our -- symptoms of inflammatory bowel disease verses other things like irritable bowel syndrome or things that are less serious.
That I'm I'm sure a lot of people lot of people have to do.
With that the that's a great question -- it gets to what I always -- my medical students and residents that.
Crohn's Disease and all through the -- are among the great impostors.
Present in a way that can be confused with other things such as hemorrhoids.
Are particulates it's -- to colitis irritable files and from you mentioned.
Often these can be -- with inflammatory bowel disease the first step.
It is you need to be seen by.
Gastroenterology is who has knowledge and understanding of these diseases.
And you need to be heard you needed a good history.
You need to download that story to somebody who's going to be able to pick up any yellow red flags that might say this could be something more than something routine.
Especially at the symptom that's been going on for longer than six weeks -- doesn't seem to be responding.
To the standard therapy for one of those less severe conditions.
The second after the history's been -- is testing.
And the testing should be very much directed toward the system and try to confirm.
Whatever history so it's the time to get that history that interchange that face to face with the position that has to -- This is not something that's going to be done.
On line this is if it's really that kind of and interaction with the position and it does take time because these conditions are complex and they present with symptoms that seem.
As I -- there will very.
Well I would say from a personal standpoint that.
I was -- was relieved to finally gotten the diagnosis that I went through a period of about two or three years where I knew something was wrong.
I was never told exactly what it wasn't it wasn't until I finally had.
A specific test.
Which was called a small -- series that the doctor was able to say -- you have Crohn's Disease and I had never heard of Crohn's Disease at that point.
I was a little bit frightening but at the same time it was.
Okay will this is what it is now what do I do about it and how to -- deal with -- so.
So that's why would -- and I'm glad that you mention that the people should not ignore these symptoms you need to go and get them checked out.
-- because once you do know what it is that you're dealing with.
Then there's -- there's treatment.
That that you can start to pursue I always tell my patients the first thing that I like to bring to them.
In this -- without any diagnosis and every position us to keep this in mind they need to have a name they need to have a diagnosis and then.
That's where the intelligent treatments comment if you don't have a name to start with a diagnosis.
It's very hard to -- good care.
Doctor -- mentioned when people's typically starts -- to have symptoms.
It's sort of in teenage years.
And this year -- takes to every year to take steps walk honors a particular person a hero that's been designated.
And and this year is no different there's a young woman who is in her teenaged junior high school -- handed yet here in New York City tells about.
Her -- Merrill is this year's honored here for the New York City takes up slack which is gonna be may seventeenth at the south street seat -- -- people can still register.
And she is an amazing inspiring young one men who came on board last year to take steps -- Her team ended up raising over 161000.
Dollars in their first year.
And -- quickly signed to their family envoy to be honored.
For the 2012 o'clock and they have actually already raised over 45000.
Dollars that's a believer 2012.
She's just a little -- a mile and she has suffered quite a bit and she's a brave young -- -- just keeps going.
And believes that a cure is possible.
There's plenty of information as doctor Marion was saying all over the web when it comes to crohn's and -- -- -- -- -- CC FA dot org is a great resources.
Resource to go to to learn more about this we've also posted some information on our website as well at foxnews.com -- you can.
Read more about it there.
One quick question for you doctor -- before we say -- by people are wondering about new treatments.
Because there are all you know doing the research that that events like take steps goes to.
Is to lead towards treatments and eventually cure are there any new.
Treatments or or or anything that's coming up that's maybe down the -- that people can look forward to.
I have never seen the pipeline of new treatments and new agents more robust.
In maybe might.
Eighteen years of practice.
There are a lot of exciting new developments there are great new clinical protocols going on right now.
At major academic centers including mount Sinai.
And I think it's very important that patients know about these this and see if they website is very good at letting patients know about these agents.
Crohn's the crohn's and colitis foundation research initiatives.
Have been responsible for every major new treatments that we have it for inflammatory bowel disease.
In -- -- Six MP.
The anti Tina the biological agents.
All of which -- completely revolutionize the treatment of Crohn's Disease.
In -- sort of colitis over the last few years so the answer is.
Absolutely yes there's great new hope with these treatments and we have a better understanding about how some of the older treatments work.
And I'm extremely optimistic about the future in terms of not just.
-- and hopefully -- -- Well I'd like -- that you know people -- -- -- very heartened by that as well doctor Mary thank you very much we -- give special shout out to.
One of our staff members who is suffering right now from this disease we hope that you feel better soon.
I've been there to know what it's like Rondell has been there and knows what it's like CC FA dot org is the place to go you can learn more about the take steps walk.
Here in New York City and you can find a local chapter in you -- area.
You can there isn't a place for you to put in where you live you can find some information I can't stress enough what a great resource.
Crohn's and colitis foundation of America is and actor James Marion who is.
Doctor specializes in in inflammatory about the season mount Sinai.
-- -- in your city thank you both so much for coming -- -- and laughing with it takes steps walk thank you.