Importance of Support Networks for Families Affected by Sanfilippo Syndrome

Learning that your child or other family member has a rare disease like Sanfilippo syndrome can bring a tremendous amount of pressure to bear. It’s not uncommon for parents and caregivers to feel isolated.

A good support network can help you connect with other families in a similar situation. Your doctor may be able to help direct you to support networks in your area, and we offer suggestions for finding networks below.

What is a support network?

Support networks are made up of people who encourage and assist you. These are the people you call when you have good news to share, or when you need help. Support networks can be informal and consist of your family, friends, and coworkers, or they can be more formal as part of a support group, professional organization, or religious circle.

How can a support network help?

Research studies have shown that a good support network helps to alleviate stress and stabilize emotions. There are even physical benefits to having such a network, such as better cardiovascular health.

Connecting with other people can help you put things in perspective and may make your burdens seem smaller, working to reduce stress. You may need help with something small, like with running an errand one day, or something larger, like help in the home. Having people that you can call when you need help can make a situation feel less desperate.

How can I create a support network?

Our website, Sanfilippo Syndrome News, can be a good place to start. We currently publish two columns, “Finding My Peace With Sanfilippo” by Emily Wallis, who has a sister with this disease, and “Parenting a Sanfilippo Child” written by their mother, Kelly Wallis. In addition to the daily life insights and advice these columns may offer, we regularly publish articles about new research in the field and potential treatments being developed.

Taking steps to build a social support network can be difficult when you are stressed. If you need help immediately and don’t have the time to build a social support network, a more formal support group may be the best place to look.

The following organizations also offer information about treatment options and ongoing research, and have networks that allow you to connect with other families:

• Sanfilippo Children’s Foundation
• National MPS Society
• Team Sanfilippo Foundation
• National Organization for Rare Disorders

Last updated: Feb. 26, 2020

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Sanfilippo Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.