Practice English Speaking&Listening with: Outperforming Crohn’s Disease | Analise’s Story | Weill Cornell Medicine

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When I'm onstage I feel such a rush of joy and excitement and all of these

different feelings bottled up into one person my name is Analise Scarpaci

I'm 18 years old and I am an actress singer and dancer living with Crohn's disease

My first big audition was for Billy Elliot on Broadway I was 10 years old

after the audition I felt very weak I had been to the

bathroom a lot and I started bleeding the day after my audition or a couple

days after my dad said no this is not right you have to go to the doctor when

Annalise first came to New York-Presbyterian Weill Cornell Medicine she had had blood

in her stool for over a year we had performed in upper and lower endoscopy

and we realized that she had Crohn's disease Crohn's disease is one of the

inflammatory bowel diseases you can have belly aches, fevers you can have blood in

your stool because it affects the upper GI tract you can actually have poor

growth and that's something that Annalise showed over the past ten years

the landscape of treatments has changed dramatically today were actually able to

pick out precisely what medicine would be best for a particular individual and

so after a very thoughtful discussion with her parents

we decided on using a biologic hold and flicks a map every seven weeks hit my

infusions I meet with my nurse after I'm finished with getting my vital signs

taken I go to my chair and I wait for my medicine I created this relationship

with all of my nurses and my doctors they are the most amazing people

when Annalise first came to our Center she and her parents understood that we

had a number of research studies that we were doing one of the research studies

that she has been involved in is the live IBD cell bank working with

Dr. David artists and the other investigators in the lab has allowed us

to look at patient's genetics their intestinal microbiome and their tissue

in order to understand what is going on within their immune cells the quantum

leap that the pediatric IBD life cell bank has enabled us to undertake is that

working with live cells isolated from patients is allowing us fundamental new

insights into how the immune system is changing and the context of paediatric

IBD once diagnosed with inflammatory bowel disease this is a lifelong

condition so there is an urgent need for us to understand how this disease

develops and how we can intervene therapeutically to make sure that we

improve the lives of patients for not for the partnership between Weill Cornell

Medicine and New York-Presbyterian plus the patient's like Annalise and her family

we would simply not be able to make the scientific advances that we are making

right now to understand this complicated group of diseases when I was 13 I was

extremely fortunate to have gotten a role in A Christmas Story the musical on

Broadway it was just an unforgettable feeling I couldn't get the smile off my

face my mom was screaming my dad was screaming I called my grandparents they

were I was just a lot of screaming I went for treatments every seven weeks I

never missed a performance six months later

I booked Matilda on Broadway I went for my treatments went to school full-time

and I still performed one of the things that

I think is so important when someone is diagnosed with a chronic illness and

especially children is to never take away their hopes or their dreams and so

early on when she came to me and she said that she wanted to be an actress I

was gonna do everything in my power to make sure that she got to that point if

I could say anything to my team was a huge thank you for everything I mean

they have watched me grow up and they're part of who I am today

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