Diagnosis

Beginning your journey with MPS or related disease:

Has your child recently been diagnosed with an MPS disease, or is your child undergoing diagnostic testing? We know the information you have received is new and confusing, but please know we are here to help, and can provide you with an abundance of information.

Where should you start?

Learn more about the specific syndrome by visiting the following page.

Visit the MPS Library and download a copy of our syndrome booklets and fact sheets.

Become a member of the National MPS Society. Complimentary one-year membership is available for newly diagnosed families. Contact Laurie Turner, Program Director at laurie@mpssociety.org or fill out a Complimentary Membership Form for Newly Diagnosed Families (pdf) and e-mail it to Laurie, or mail in a hard copy.

Learn how the society was started.

Connect with other families who have a child with the same syndrome. The National MPS Society office can help make this happen. Other parents are the best resource available. E-mail info@mpssociety.org for additional family connections.

Attend local MPS events. Is there a fundraiser or walk/run happening in your area?

Know that you are not alone. See our Emotional Response to Diagnosis Fact Sheet and Dr. Kimberly Frye’s presentation on Coping with MPS.

Treatment options: At this time, Enzyme Replacement Therapy is available for MPS I, MPS II, and MPS VI. Bone Marrow or Cord Blood Transplant is recommended for some individuals diagnosed with certain type of MPS.