The MPS I Registry program, sponsored and administered by Genzyme Corporation, is a worldwide database that tracks health-related information for people with MPS I, allowing doctors and health care professionals to better understand and treat the disorder.
“With patients and their families, I continue learning over and over what are the important things in life and which are the ones that are worthy to fight for: life, dignity and hope.”– Dr. Muñoz, MD
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MPS I is seen in all populations at a frequency of approximately 1:100,000. There are severe and attenuated forms, (historically known as Hurler, Hurler-Scheie, and Scheie) that occur in roughly equal proportions.
When a child or young adult presents with joint pain and stiffness but does not demonstrate morning stiffness or local inflammation around the affected joints, MPS I should be considered part of a differential diagnostic process along with Juvenile Idiopathic Arthritis .
Alicia is a 16-year-old with MPS I who was diagnosed 10 years ago. Watch Alicia’s story to find out how she is handling life as a teenager living with MPS I.
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In patients with moderate to severe MPS I, coarse facial features develop slowly in the first year and by two years of age are usually fairly obvious.
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