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.

Many of the ideas here can be read in more detail in a full printed Resource Guide for Individuals and Families can be ordered from the National MPS Society. In the United States, they can be reached at 1-207-947-1445.