Alagille Warrior Journey: Nicolette Valente
Nicolette Valente:
So my name is Nicolette Valente. I’m 23 years old. I was born and raised in Brooklyn, New York, but I currently live in Philadelphia. I go to Drexel University and I’m studying biomedical engineering. My journey with Alagille syndrome, I was diagnosed when I was around one years old by Dr. David Coli at CHOP.
Interviewer:
Journey Through Medical Procedures
Nicolette Valente:
So my medical schedule when I was growing up and an adolescent was definitely more hectic. I would go to CHOP, Clinton’s Hospital Philadelphia about every three months, and then every six months and now it’s only once a year. I’ve had three cardiac catheterizations. So those were inpatient procedures. The third one was successful and I have had no transplants.
Interviewer:
The Importance of Finding Others
Nicolette Valente:
So I would say I first started with the Alagille Syndrome Alliance going to their symposiums. I think the first one I went to, I was too young to remember. And going there and meeting other children with Alagille syndrome was definitely a big part about my life. I didn’t like growing up, I didn’t really know anyone who had the same condition because it was so rare. So getting to speak with them and learning from other people about how they’re affected in their journey was definitely very important to me and shaped how I dealt with it growing up.
Interviewer:
Helping Understand and Being Informed
Nicolette Valente:
Well, I guess the best way to help, it’s by learning more about it because it’s such a rare condition. Over the years, new technologies have been developed. We know a lot more about it than we did 20 years ago. So I think the biggest part of helping is by participating in research, participating in studies so we can figure out the unknowns that are still there.
Interviewer:
Awareness to Limitations: Being Mindful
Nicolette Valente:
I guess the biggest thing growing up with Alagille syndrome is that there are big limitations. You can’t go about your childhood in the same way that someone who doesn’t have it can. So I guess other people should be aware of your limitations and help you navigate what things can you do. I guess for me, dance was big part of my life. Obviously there were a lot limitations in the things that I could do, but I still was able to participate in normal childhood activities.
Interviewer:
Involvement in Education: Rewarding Experience
Nicolette Valente:
So I guess the question itself, I didn’t really point my education towards working with Alagille syndrome. Well, I guess really growing up at CHOP, I was exposed to the medical field. And so from really a young age, I always knew I wanted to work in STEM. I wasn’t really sure specifically the area that I wanted to pursue, but I found my way to genetics. I was always really interested in what causes disease and why some people are affected by it differently. And so I got the opportunity to work at the Center Lab at CHOP, and I ended up by accident working with Alagille syndrome, and it’s really been something I didn’t really know I wanted to do. I’m doing research currently that affects me, and it’s been a pretty fulfilling and rewarding experience having it come full circle.
Interviewer:
More Research: Alagille Advocacy
Nicolette Valente:
Well, I feel like Alagille syndrome, like any other rare disease, yes it only affects a small percentage of people, but there’s still this huge unknown and this is overlapped between other rare diseases. And so it’s important. The more we learn about Alagille syndrome and other diseases, the more we know about how genetics plays a role in science as a whole. I would say the main call to action is more research. For as much as we do know about syndrome, there’s so much that we don’t know, and I feel like we only got to the tip of the iceberg in terms of the knowledge that is out there. My call to action is more research.
Interviewer:
Advice for the Newly Diagnosed: Leaning on Community
Nicolette Valente:
What I’m saying is educate yourself. There is a lot of scary information, and especially for someone who doesn’t know about Alagille syndrome and is hearing it for the first time, you don’t know where to start. But I think the more you educate yourself, the more you’re able to learn how it affects you specifically and can get better treatment. Also, talking with other families. I feel like every patient has a different story and there’s so many different treatment options that some might work, some might not. So it’s just speaking with other families and learning what their journeys are could help with you with yours.
