Living with MPS I

The issues presented by MPS are a lifelong challenge for many patients and their families. Over a period of years, MPS I disease may present a variety of issues to manage, and every person will likely have a different experience.

This section provides suggestions that may help you:

  • Learn how you might maintain a record of your medical care
  • Consider aspects of MPS I in school, work, or home life
  • Be aware of the emotional components and stress of a chronic disease
  • Communicate with physicians and specialists
  • Talk to other families affected by MPS I
  • Generate your own ideas about how to communicate and manage the disease

We encourage you to tailor the ideas here and adopt them in a way that works for you and your family.

Did You Know?

MPS I is part of the mucopolysaccharidoses (MPS) family, a group of inherited diseases, each caused by accumulation of various glycosaminoglycans (GAGs) in the lysosomes. The exact GAGs that accumulate are different in each case. MPS diseases include seven sub-types and although each of the disorders can cause a variety of different symptoms, many of the diseases share similar symptoms, such as corneal clouding, short stature, and joint stiffness.