Hunter Syndrome Diagnosis Information

Many of the early signs and symptoms of Hunter syndrome are commonly seen in infants and toddlers, so the road to diagnosis often takes time. As a parent and caregiver, it's important to be an advocate for your child. Educating yourself and providing information to your pediatrician can go a long way toward getting a diagnosis more quickly.

The path to diagnosis:
  • Symptoms usually appear between 2 to 4 years of age
  • Visible signs and symptoms of Hunter syndrome (MPS II) are usually the first clues
  • Doctors may use laboratory tests to provide additional evidence that an MPS disorder is present and refer you to a medical geneticist for further testing
  • A definitive diagnosis of Hunter syndrome is made by measuring the iduronate-2-sulfatase (I2S) enzyme activity

For more information about Hunter Syndrome, download the
Hunter Syndrome Brochure (en espanol)

OnePathSM Services

OnePathSM is a great resource if you have questions about Hunter syndrome or about navigating through prior authorizations or other insurance related matters. You may contact OnePathSM at 1-866-888-0660 and onepath@shire.com. Case managers are available to answer your call from 8:30am-8:00pm ET.

NICHCY Parent Guide

www.nichcy.org

This guide from the National Information Center for Children and Youth with Disabilities (NICHCY) is intended to assist families in obtaining help for their young children with special needs (ages birth through 5 years).