Everyday Topics

Adjusting to Daily Living With Hunter Syndrome

After a child is diagnosed with Hunter syndrome, parents face many real-life questions for daily living:

• keeping track of medical information
• emotional responses of siblings and family
• talking to loved ones about the diagnosis
• strangers and teasing
• asking friends and family for help
• difficult behaviors, socialization, and education issues
• difficulties with eating, toileting, and sleeping
• home modifications
• travel

To provide guidance on these questions, the National MPS Society has developed a comprehensive resource for the parents of children with MPS—Daily Living With MPS and Related Diseases. The 40-page booklet was written in large part by parents, for parents, and it addresses all of the above questions and more.

Daily Living With MPS and Related Diseases is available at no charge from The National MPS Society through their Web site:

www.mpssociety.org

Finding a Specialist Physician

Hunter syndrome typically requires management by multiple specialty physicians. These specialists can include geneticists; genetic counselors; pediatricians; otolaryngologists (“ENTs”); pulmonologists; cardiologists; neurologists; orthopedists; endocrinologists; and behavioral specialists. When trying to find specialists who have experience in special needs or Hunter syndrome, here are some practical tips*:

* Adapted in part from: www.parenttoparentnys.org

How to Find Specialists

• Ask your primary care physician, friends, and relatives for recommendations
• Check with area hospitals—many offer referral services
• Check with your county medical society
• Ask your insurance company, health maintenance organization, or managed care plan if they have preferred physicians to choose from
• If you are moving, ask your current physician for a referral
• Use the links below to find specialists near you
  • Physicians (all specialties)
    • American Medical Association
  • Pediatricians (and pediatric specialists)
    • American Academy of Pediatrics
  • Geneticists
    • American College of Medical Geneticists
    • American Board of Medical Genetics
  • Genetic Counselors
    • National Society of Genetic Counselors
  • Otolaryngologists (ENT specialists)
    • American Academy of Otolaryngology-Head and Neck Surgery
  • Orthopedists
    • Pediatric Orthopaedic Society of North America
    • American Academy of Orthopaedic Surgeons
  • Endocrinologists
    • American Academy of Endocrinology
  • Cardiologists, Neurologists, Pulmonologists, and Behavioral Specialists
    • Use the links provided above for Physicians and Pediatricians to find these specialists.

Choosing the Right Specialist for You

• Check if the physician is licensed and board certified
• Call the American Board of Medical Specialties toll-free at 800-ASK-ABMS (800-275-2267) to confirm board certification
• Once you have identified specialists you may want to use, set up a time to interview them; many offices will set aside time for brief interviews
• Ask the specialist how many people with disabilities the practice serves
• Ask about their policy for accommodating people with disabilities (eg, reduced wait times, quiet waiting areas)
• Ask about office hours and locations, payment requirements, emergency and after-hours coverage, the availability of telephone consultations and house calls, and at which hospitals the physician has admitting privileges
• Review your health insurance plan to see if a physician is part of your insurance network or if the plan covers “out of network” referrals