Trusted Resources: Education

Scientific literature and patient education texts

Daily Living With MPS and Related Diseases

key information

source: National MPS Society

year: 2017


Dealing with your child’s diagnosis will most likely be the hardest task you will encounter during your lifetime. Many parents learn that obtaining, deciphering, and monitoring information is their best weapon to combat the powerless feeling that comes with their child’s diagnosis. As a result, you will have to learn how to find and manage information like you never have done so before. This information will be useful in alieving your own fears about the future and adequately managing the care of your child. You will often be required to know what needs to be done for your child and to inform healthcare providers of your child’s medical history. Parents have shared the following tips on how they obtain and manage their child’s medical information:

• There are no stupid questions. If you don’t know something, ask.

• You can and should request information. Educate yourself on how to request access to information and records and what your rights are. Sign forms to have medical information released to you regularly from your doctors.

• The MPS societies have a collection of journal articles available to you. There are many links to MPS-related topics on MPS society Web sites.


read more