Managing Hunter Syndrome – Specialist Information

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Key surgeries:

Tonsillectomy and adenoidectomy²

Tympanostomy¹

Umbilical and inguinal hernia repair^1,2

Carpal tunnel syndrome release¹

A history of early and frequent surgeries is a defining characteristic of Hunter syndrome and may trigger clinical suspicion.¹ Repeat surgeries should serve as a clinical red flag, especially those that are rare in the unaffected population such as carpal tunnel syndrome release.¹ In children, the most common cause of carpal tunnel syndrome is an underlying MPS disorder.² Umbilical and inguinal hernias are also a common reason for Hunter syndrome patients requiring surgery, with a prevalence of approximately 50%; much higher than the general population.²

Hunter Outcome Survey results

In the Hunter Outcome Survey (HOS), a multinational, observational database of 527 patients, nearly 84% of MPS II patients had undergone a surgical procedure.² As a pediatric surgeon, you may be one of the first physicians to suspect MPS II, as the majority of patients (56.8%) underwent at least one surgical intervention before diagnosis of MPS II.²

HOS data also showed that the median age of first operation was 2.6 years. In young patients (under 3 years) the most commonly repeated surgical procedures were tympanostomy, tonsillectomy, adenoidectomy, and hernia repair.² Operable manifestations such as hernias and otitis media are among the first signs and symptoms to occur in patients with MPS II.²

MANAGING HUNTER SYNDROME (MPS II)

Key surgeries:

ACT EARLY