Welcome to the XLH Community Guidebook
Created by Kyowa Kirin and the XLH Network for XLHers and their families, the XLH Community Guidebook provides education and tips to help you thrive.
Whether you or a loved one recently received a diagnosis of XLH or are facing specific challenges related to XLH, use this resource to:
- Understand what to potentially expect throughout your XLH journey
- Learn how to advocate for care
- Prepare for key milestones and transitions
- Find resources that you may find helpful in support of your mental and physical health
The information in the guidebook is based on clinical guidelines, data from XLH experts, and first-hand experiences from XLHers.
Remember,
every person’s journey with XLH is unique! This information is not meant to replace advice from a doctor or healthcare professional. Talk with your doctor about any specific health concerns you may have or questions about how to manage XLH.
The Guidebook includes educational information for the XLH journey. We know there’s so much useful information here. We also know we have more work to do!
If there are topics or resources you want added, please reach out to info@xlhnetwork.org.
Susan Faitos
Executive Director of the XLH Network, Living with XLH
How to use the XLH Community Guidebook
The Guidebook provides useful information and tips for the XLH journey. Use the navigation at the top of the page or click below to view the content provided:
Understanding XLH
Find important facts about XLH including its causes and how symptoms can change over time.
Diagnosing and Managing XLH
Learn more about the diagnosis process, the XLH care team, and management of XLH.
Monitoring XLH Throughout the Journey
Learn about monitoring the progression of XLH and symptoms across the life span.
Preparing for Key Transitions
Find information about navigating life’s transitions like changing from a pediatric to an adult care team, starting a new job, or moving.
Daily Living with XLH
Learn about ways to support you or your loved one at school, at home, or when traveling.
Fostering Health and Wellness
Understand common challenges related to XLH and potential ways for addressing physical and mental health.
Looking for information on a specific point in the XLH journey?
Use the “Browse Resources” search button on the left of your screen to jump to content for:
Children
(Ages 0-12)
Teens
(Ages 13-18)
Young Adults
(Ages 18-25)
Adults
Looking for information on a specific point in the XLH journey?
Use the magnifying glass on the bottom right of your device to browse resources for:
Children
(Ages 0-12)
Teens
(Ages 13-18)
Young Adults
(Ages 18-25) Adults
About the XLH Community Guidebook
Producing a guidebook like this takes careful planning and collaboration.
For XLHers, By XLHers
The XLH Community Guidebook was created in partnership with the XLH Network and Kyowa Kirin.
Thank You to everyone whose expertise contributed to the development of this resource, including:
- XLHers who provided topics, input on content, and shared their unique experiences with others
- XLH experts for guidance and input:
- Erik Imel, MD
- Carolyn Macica, PhD, MS
- Elizabeth Olear, MS, MA
- We also acknowledge the SmithSolve team for their dedication in bringing this project to completion.
