Heart and Airway Disease

People suffering from Hunter Syndrome can develop respiratory failure, severe sleep apnea, and upper airway collapse.  Affected individuals may also develop numerous and recurrent respiratory infections and a thickening of the heart valves.

People with Hunter Syndrome may have a wide range of skeletal symptoms.  These can include shortened stature, bone deformities, carpel tunnel syndrome, and multiplex dysplasia.

Hearing Loss

Usually common in the second decade of life, hearing loss can be progressive and severe.

Eye and Vision Issues

While common in many other forms of MPS, it is rare for people with Hunter Syndrome to develop corneal clouding and a debilitating decrease in vision. Night vision can also become an issue for MPS II patients.

Brain and Cognitive Impairment

People with Hunter Syndrome may experience cognitive decline, though it will be difficult to diagnose this impairment until age 4-6.  Patients may also suffer from hydrocephalus.

Specialist Care

Patients battling Hunter Syndrome often visit numerous specialists to help manage their disease.  These can include, but aren’t limited to, MPS Genetics Specialists, Neurologists, Ophthalmologists, Orthopaedic Specialists, Cardiologists, ENTs, Pulmonologists,  and Rheumatologists.  

Surgical Interventions

In almost all cases of Hunter Syndrome, patients need multiple surgical procedures.  These may include skeletal corrections, heart valve replacements, and other procedures.

Decreased Endurance

Studies have shown that endurance of affected individuals is impacted greatly due to the progression of the disease.  Endurance has an impact on all facets of life.  Recent clinical trials have shown a significant increase in endurance for all patients receiving enzyme replacement therapy.

 

CONTACT US AND SHARE YOUR STORY!

We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!