Dr. Frank Sileo, Championing Crohn's Disease In a Unique Way

New Jersey doctor takes his awareness campaign to a national level with an oustanding collection of books.

By , Contributor

If you don’t already know the name Dr. Frank Sileo, you soon will. A full-time child psychologist voted as one of New Jersey’s favorite kids’ doctors, dynamic public speaker, and author of three books, he maintains a successful track record of helping children all over the country deal with issues that they struggle with in a relatable way.

His books, which address issues such as Crohn’s disease, lactose intolerance and homesickness help both children and adults to understand these issues and the feelings and issues that go along with them. All the while providing educational touch points that siblings and friends can easily understand. Dr. Sileo recently shared with us his inspirations for the books and his next exciting direction on his campaign for awareness.

Tell me a little bit about your background; what drew you to this career path?

Ever since I was little, I was always interested in helping others, even as a kid in school. It sounds cliché, but peers would frequently come to me for advice. I was the kind of friend that held people’s secrets, never one to share with others so I enjoyed the fact that people came to me. I’ve always enjoyed helping others.

Growing up I was bullied a lot in school and it was a painful time of my life. I had a supportive family and great teachers who helped me through it but it was very difficult for me. I was a redhead, it wasn’t easy being a smart, non-athletic guy so I went through a very hard time. So as part of my practice now, I work with kids not only who get bullied but also who bully others. In one of my books, Hold the Cheese, Please, one kid gets teased as a result of being lactose intolerant, so I’ve educated kids on the theme of tolerance and the disease also. I’ve always known you shouldn’t make fun of others, and this is what led me to do all of this.

What compelled you to want to write these books?

Well, I wrote the first book to fill a need that existed in the bibliotherapy market, which is a child therapy technique where one reads a story about a problem which helps them validate their thoughts and feelings, teaches them how to cope with healthy solutions. Because I was working with Crohn’s disease patients, I started with Toilet Paper Flowers, based on stories I would make up with patients. Kids always used to ask me why there were no books for them and what they were going through. One patient said, “We need a book, Dr Frank!” and just out of the mouth of a child, I started thinking and came up with the idea for Toilet Paper Flowers.

I found a publisher who was willing to take a risk on first-time author; her sister has Crohn’s and the idea really spoke to her in some way. We were a good match and things just kind of progressed from there. I then wrote my follow up, Hold the Cheese, Please, which addresses lactose intolerance, and the ideas came from my sessions, finding problems that children struggled with, their search for resources and relatable items, and I just couldn’t find them so I created them.

I tested out the books with the kids to see if they felt good from them, and they did so I kept writing. I love reading to kids in therapy, it’s so natural because kids love stories. It’s safe for them to hear a story about a painful subject or about feelings they maybe can’t really express. The patients here were really my inspiration; their strength and will inspired me to create these tools that help.

What were the goals for the books?

The goals were to educate both parents and children, to have them share these stories with friends and family to teach them about these diseases and issues. To teach them that it’s ok to be scared, and also to impart knowledge, because knowledge is power. When we understand something, we don’t feel powerless. I also wanted to provide a tool with solutions on how to cope with diseases.

Has it been difficult to disclose your personal issues in a public way?

Most patients know that I have Crohn’s, but I never make it about me. I understand and am empathetic to it which helps, but my goal is to see how they are coping with it. I hope my disclosure and my work is a example that you can have hope despite adversity. You can have goals, and if you work towards them you can be what you want, a doctor or anything else.

And yes, sometimes it stinks that we can’t eat cheeseburgers, and we talk about going to the bathroom all the time in my practice. There is no shame in that, it’s a human function and Chron’s is something difficult to deal with, not something shameful. I disclose to a point but at the end of the day the therapy is really about them. When they try to make it about me, I put it back to them so they can’t avoid the issue.

How has the reaction been from the public?

It’s been incredible in many ways. I lecture around the country now via the Crohn’s & Colitis Foundatin of America. Kids come up to me and give me flowers made of toilet paper and thank me for writing the books. I get emails constantly from people thanking me for what I have done to bring awareness to a problem and the reactions from my patients have been amazing.

From the media, the reaction hasn’t always been as positive or loud; nobody really wants to talk about this particular disease because it’s not sexy. I really don’t know any disease that is sexy but I know how the media perceives it, and it’s a bit frustrating. I want to bring awareness to people about the struggles associated with Crohn’s. it’s a big issue. I know what it’s like to say “why me?” but the media sometimes prefers to focus on other issues. All diseases are big issues and important to address, and celebrity doctors have done a great job of bringing awareness to more widely known issues, but people don’t necessarily die from Crohn’s and diseases shouldn’t have to be terminal to get recognized in the media.

It’s something that affects people, and in many cases we’re talking about kids who are struggling with this in school. Imagine something as simple as a kid not being able to have ice cream or certain foods, or not being able to go to a birthday party because you’re so tired, and suffering from chronic pain. Kids with Crohn’s don’t grow easily, their peers are growing and changing and they’re not. I just wish the media would perhaps embrace it more and not just make it about diarrhea, to be honest. Still, if I can reach even just one kid, I’ve done my job and that’s the most important thing in the end.

What's been the best part so far about what you do?

It’s honestly something as simple as seeing someone on my Facebook page telling me they used one of my books in their class to explain to peers what’s been going on with them. Or, meeting a child at an event, having them bring me a toilet paper flower and saying thank you. There are no words to describe what that feels like. It’s an incredible gesture, honest and true from a child, and when they do something like that it’s amazing.

What's been the most challenging part?

Being an author, it’s not easy to get the buy-in from the media. It can be such a huge platform, and when you don’t get the opportunities you’d like to get to spread your message about a really serious issue, it can get frustrating. If you watch morning shows for example, just take a look on the books that get promoted. We are living in a Kardashian world, things like that become more important than anything else in the media today and yes, I get it, but then I also don’t get it. I mean, I certainly understand celebrity press but as someone championing a cause, it’s frustrating.

As a psychologist, I see insurance cutting back so much on mental health, whether it be depression or coping with illness and if they embraced therapy more as something to reimburse, maybe we’d see less physical problems around. People need to learn how to deal with stress better when they have a physical illness, there’s not enough coverage these days and patients aren’t always getting the services they need.

What's next for Frank Sileo?

Well, in the near future I have a new book that I am waiting to sign a contract on. I can’t disclose the details yet but it is a kids' book and very different from the other three. I’m extremely excited about it and even working now on book number four, hoping for that to be out in the fall!

For more information on Dr. Sileo and his books, please visit his website.

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A child of parents both heavily involved in the travel industry, Gabriella Ribeiro Truman was born to do her job. By day she owns and operates Trumarketing, a boutique sales, marketing and PR firm servicing tourism-related clients from around the world. Also a frequent blogger, she produces The Explorateur…

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