Answering Girls’ Questions on Puberty and Bleeding Disorders

A new educational book from NHF tackles everyday issues
Author: Liz Krieger

The onset of adolescence can be sudden or slow, but regardless, it comes with a host of physical changes. And for girls who have bleeding disorders, there are extra considerations. Thankfully, there’s a new National Hemophilia Foundation (NHF) book that addresses these issues in an approachable and clear way.

The 48-page book, Time to Talk Puberty: A Guide for Girls with Bleeding Disorders, provides a comprehensive overview of bleeding disorders, how they are affected in puberty, treatment options, and tips and tricks. While it’s important that girls with bleeding disorders have an open dialogue with their doctors, the book will be a nice accompaniment to those face-to-face discussions, says Robert Sidonio Jr., MD, MSc, director of hemostasis and thrombosis clinical operations at the Aflac Cancer and Blood Disorders Center at Emory University in Atlanta.

What is the right age to talk about puberty?

Talking about puberty with your daughter should start earlier than you may think—by age 8 or 9 at the latest, says Sidonio, who helped create the book. “The average age of a girl’s first period is around 10 to 11 years of age, so it is important to provide some anticipatory guidance,” he says.

This new publication is particularly impactful because it’s visually appealing—with a format and verbiage geared for adolescents. There’s a section on “real” questions that covers everyday problems tween and teenage girls with bleeding disorders face, such as what to do if you have a nosebleed when you’re at a sleepover and how to manage cramps. “Many of these questions are ones I hear in my clinic, but I think some teenage girls may be afraid or feel uncomfortable asking their providers about these issues,” Sidonio says.

It can be difficult for young women with bleeding disorders to know what is and is not normal, says Christine Guelcher, RN-BC, MS, PPCNP-BC, the HTC program coordinator at Children’s National Hospital in Washington, DC, who was also involved in developing the book. “There may be other female family members who are affected but don’t realize it because heavy bleeding is the ‘norm’ in their family. This book addresses these issues in an age-appropriate way.”

“The book helps girls understand that there are lots of ways to manage heavy menstrual bleeding and that there are even apps that can be used to keep track of what is working and allow providers to make individualized adjustments,” Guelcher says.

 

To receive a PDF of Time to Talk Puberty: A Guide for Girls with Bleeding Disorders contact HANDI by phone at 800.424.2634 or by email: [email protected].