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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. |
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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.
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Meet Denise, a 40-year-old woman with MPS I who enjoys her life to the fullest.
Watch the Video |
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Genzyme Corporation
500 Kendall Street
Cambridge, MA 02142 USA
Phone: 617-768-9000 or
800-745-4447
Contact Genzyme
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