According to the Crohn’s & Colitis Foundation, Crohn’s disease and ulcerative colitis belong to a group of conditions known as inflammatory bowel diseases. These disorders affect the gastrointestinal tract, causing painful and debilitating symptoms in nearly 1.6 million Americans, including Piper Anastasia Brown, Neapolitan Family’s October 2021 Cover Kid.
We talked to Piper and her mother, Alexia, about how this disorder has affected Piper and her family.
Alexia: Piper was diagnosed with ulcerative colitis in January 2021. Our pediatrician, Dr. Sara Lane, was very thorough when Piper became symptomatic and quickly got us on the right path to a diagnosis. Piper receives monthly infusion treatments at Golisano Children’s Hospital, and she is under the care of the IBD Center at Nicklaus Children’s Hospital in Miami.
Monica Alvarez Photography
How has living with this disease affected your family?
Alexia: Piper is on an immunosuppressive treatment, which has been even more challenging due to the pandemic. We take extra precautions to keep her healthy, limit travel and interactions, and spend a lot of time on Zoom.
Piper is unable to attend school at this time since masks are optional. It is a balancing act to protect her health and also provide her with a sense of normalcy.
Piper continues to persevere emotionally, socially, and academically, and we are very proud of how well she has handled such a challenging condition with a pandemic added to the mix.
What would you like for people to know about this disease?
Piper: When I was first diagnosed I felt sad and anxious because I didn’t know what to expect, and I wish I didn’t have ulcerative colitis. Now I feel more comfortable with things like my infusions. At Golisano they have a therapy dog named Dorian and he helps distract me because I don’t like needles.
I would like people to know it gets better and don’t give up. Even on the rough days, remember to listen to your body, and don’t forget better days are ahead.
Alexia: Ulcerative colitis is an invisible illness and like most chronic conditions, it is life altering. Flares are unpredictable, and it is a challenging condition to treat, but there is hope. The amount of research being done is encouraging. We are very confident in Piper’s doctors, and we are hopeful that she will reach remission in the future.
How has the Crohn’s & Colitis Foundation helped your experience?
Alexia: The Crohn’s and Colitis Foundation has offered us a wealth of information from patient and caretaker education, a local support group, and the latest research. The most valuable experience from the Crohn’s & Colitis Foundation has been Camp Oasis. It is a weeklong summer camp for children with ulcerative colitis and Crohn’s disease. Due to the pandemic, it was virtual this summer. It gave Piper the opportunity to connect with other kids that truly understand what she is going through. We are very grateful to the Crohn’s & Colitis Foundation for providing such an invaluable experience and hope Piper can attend in person next summer.
What are your hobbies?
Piper: My hobbies are acting, playing video games, singing, and watching Stranger Things.
What are your favorite subjects in school?
Piper: My favorite subjects are music and social studies.
What would you like to be when you grow up?
Piper: I want to be an actress when I grow up. I’ve been doing theater since I was 5 years old. The first thing I learned how to read was a script for Peter Pan.
How has living with ulcerative colitis affected your school life and hobbies?
Piper: I am immunocompromised because of my medication. I can’t go to school in person since masks are not required. I have not been able to do a show for theater since last year. I really miss both, and I can’t wait until things with COVID-19 get better.
I have been taking private acting classes with Tish Poorman from Children for the Arts. I have also been doing auditions for camera work because most are being done virtually right now.