Health Insights

Sanfilippo syndrome is a rare progressive disease that affects the nerve cells. The disease can cause a condition known as carpal tunnel syndrome, among other symptoms. What is carpal tunnel syndrome? Carpal tunnel syndrome is the most common entrapment neuropathy in adults. Characterized…

When your child is diagnosed with a rare genetic disorder such as Sanfilippo syndrome, it can be difficult to effectively express concerns to physicians. You may be overwhelmed by the sheer breadth of symptoms and feel that you need more information, but you aren’t sure how to ask.

If your child has Sanfilippo syndrome or mucolipidosis (ML), it is very important that you register them with the Connect MPS Patient Registry. Among other things, your information ultimately could help scientists develop new treatments for lysosomal storage diseases. The registry Launched in 2016, the…

Children with special needs can bring certain challenges for caregivers and educators. Young patients with Sanfilippo syndrome face unique problems that caregivers should discuss with daycares and schools to ensure that the children receive the specialized support and education they need. Building an individualized education plan An…

Sanfilippo syndrome is a rare genetic disorder that causes brain damage and physical and developmental regression in children. These symptoms make school and daycare challenging for children with the disease. However, social interaction is important for every child’s development. One of the tools that parents and caregivers…

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…

Families affected by a rare disease such as Sanfilippo syndrome may struggle with stress, depression, and feelings of isolation. If you have a family member with the disorder, it can feel like no one truly understands what you’re going through, making it hard to connect with others.

Traveling can be challenging for people with Sanfilippo syndrome, depending on the severity of symptoms and the nature of travel. Here are some tips to help you travel safely if a member of your family is affected by Sanfilippo syndrome: Before travel Planning ahead can help minimize the…

Many with Sanfilippo syndrome are non-verbal, and have difficulty communicating with their parents or caregivers. Music therapy may be used to help these patients with their verbal, motor, and social skills. What is music therapy? Music therapy is an established health profession in which therapists use music to…

As a parent, learning that your child has a rare disease like Sanfilippo syndrome, or mucopolysaccharidosis type III (MPS III), can be very difficult. One of the first questions parents often ask is what the diagnosis means for their children’s future, and how the disease is going…