Secondary Diagnosis

As our children age, many new symptoms caused by Sanfilippo are being acknowledged. However, some symptoms are separate medical conditions that people without Sanfilippo Syndrome may also struggle with. Some of the treatments for such symptoms can help our children. Highlighting the “Secondary Diagnosis” is crucial, along with strategies and treatments that have been used not only by Sanfilippo parents for many years, but also the patients outside of Sanfilippo.

The usual conditions of Sanfilippo are already painful and distressing, but it is heartbreaking for parents when they see new symptoms exhibited by their children. Parents need advice and resources to help their kids when such things arise. We offer no medical advice, but the information we provide can help when discussing with your child’s doctor to guide in the appropriate treatments.

Our dedicated Facebook pages can be used as a helpful resource of information. Many parents of Sanfilippo patients post videos of their children’s symptoms to give information on different diagnosis, as well as management of symptoms. The community of Team Sanfilippo Foundation is comprised of parents who can impart their knowledge and advice.

Reference Article: Pseudobulbar Affect (PBA)