Author Archives: Mary Chapman

Feeding Tubes for Sanfilippo Syndrome Patients

Eating and drinking can be problematic in Sanfilippo syndrome, a rare neurodegenerative disorder characterized by intellectual and behavioral disabilities. Finding out your child may need a feeding tube can be overwhelming, particularly when other medical issues are present. Here’s some information that may help. What is Sanfilippo syndrome? Sanfilippo syndrome…

AllStripes Asking Patients, Families to Share Health Records to Aid Research

Sanfilippo syndrome patients and caregivers are being asked to help speed the development of potential disease treatments by joining  AllStripes, and contributing their de-identified medical records to research efforts. The San Francisco-based company, previously known as RDMD, uses its rare disease research platform to aggregate and analyze such information,…

Aids and Adaptations for Children With Sanfilippo Syndrome

Because of Sanfilippo syndrome‘s progressive behavioral and intellectual disabilities, it’s likely your child will need aids and adaptations to help with everyday life. The following information may be useful as you consider those options. About Sanfilippo syndrome Sanfilippo syndrome typically progresses in three stages, beginning with developmental…

How Can Physiotherapy Help My Child With Sanfilippo Syndrome?

If your child has Sanfilippo syndrome, physiotherapy can likely help with symptoms that include spasticity and the progressive loss of mobility. Here are some things to consider. What is Sanfilippo syndrome? Sanfilippo syndrome is a rare neurodegenerative disorder characterized by continuous intellectual and behavioral disability. Typically,…

Sanfilippo Syndrome and Sleep

Sanfilippo syndrome is a rare neurodegenerative disorder that causes intellectual and behavioral disabilities. Sleep problems are common, and often severe and difficult to manage. Here are some points to consider, including possible ways of managing disturbed sleep. What causes Sanfilippo syndrome? Mutations in genes that provide instructions for…

Mindfulness for Sanfilippo Syndrome Caregivers

Providing constant care and supervision for a child with Sanfilippo syndrome can be an emotionally draining task for parents. Beyond handling physical challenges and medical demands, you must deal with your child’s emotional needs and the impact a protracted illness can have on your family. A practice…