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