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Hunter syndrome - Treatment

Alternative Names

Mucopolysaccharidosis type II, Iduronate sulfatase deficiency

Treatment:

The U.S. Food and Drug Administration has approved the first treatment for Hunter syndrome. The medicine, called idursulfase (Elaprase), is given through a vein (intravenously). Talk to your doctor for more information.

Bone marrow transplant has been tried for the early-onset form with variable results.

Individual problems should be addressed separately.

Expectations (prognosis):

Life expectancy for the early-onset (severe) form is 10 - 20 years. Life expectancy for the late-onset (mild) form is 20 - 60 years.

Complications:

Airway obstruction in late-onset (mild) form
Worsening mental deterioration in early-onset (severe) form
Worsening loss of activities of daily living in early-onset (severe) form
Worsening hearing loss in both mild and severe forms
Worsening joint stiffness leading to contractures of joints in early-onset (severe) form
Carpal tunnel syndrome

Calling your health care provider:

Call your health care provider if you or your child manifest a group of these symptoms, or if you know you are a genetic carrier and are considering having children.

Reviewed last on: 9/28/2007
David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc. Previously reviewed by Brian Kirmse, MD, Mount Sinai School of Medicine, Department of Human Genetics, New York, NY. Review provided by VeriMed Healthcare Network (8/11/2006).

References

Muenzer J, Wraith JE, Beck M, et al. A phase II/III clinical study of enzyme replacement therapy with idursulfase in mucopolysaccharidosis II (Hunter syndrome). Genet Med. 2006 Aug;8(8):465-73.

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