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.