Health Insights

Massage therapy may help some Sanfilippo syndrome patients to manage their symptoms and retain range of movement in their joints. What is Sanfilippo syndrome? Sanfilippo syndrome is a rare neurodegenerative disorder that progresses through stages of intellectual and behavioral disability. There are four subtypes of Sanfilippo syndrome that each…

Sanfilippo syndrome is such a rare disease that most physicians are unfamiliar with it. If your child has Sanfilippo and experiences an emergency, medical personnel may not fully understand what is happening or any additional risks that certain procedures or medications might pose for your child. Therefore, medical alert cards…

Respite care — time off for caregivers who tend to people with diseases, medical problems, and other disabilities — offers an opportunity for primary carers to take necessary breaks and tend to their own physical and mental health needs. Children with Sanfilippo syndrome require increasing levels of care as…

Gene therapy is a promising approach for a number of rare genetic diseases as it has the potential to treat the underlying cause. Here is more information about gene therapy, its challenges, and its current status as a treatment for Sanfilippo syndrome. About gene therapy Gene therapy is a treatment…

Sanfilippo syndrome, or mucopolysaccharidosis type III (MPS III), is a rare disease that belongs to a group of disorders involving the breakdown of long sugar molecules called mucopolysaccharides or glycosaminoglycans (GAGs). Heart problems are common in most of these disorders but are generally milder and rarer in Sanfilippo syndrome.

Sanfilippo syndrome can affect many systems in the body and lead to a variety of symptoms, ranging from neurological problems to developmental delays. To better diagnose and treat these symptoms, a multidisciplinary team of medical professionals usually work together with patients and their families. Here is information about the specialists…

The symptoms of Sanfilippo syndrome can vary from child to child, and depend on the disease subtype. They can also change as the disease progresses. Here are the seven most common signs and symptoms of Sanfilippo syndrome. Developmental delays One of the most common and initial symptoms of Sanfilippo…

There may come a time when you will need to consider palliative care for your child with Sanfilippo syndrome, and for your family. Here’s some information that may help in making that decision. About Sanfilippo syndrome Sanfilippo syndrome is a neurodegenerative disorder. Mutations in genes that provide instructions necessary for…

Sanfilippo syndrome is a neurodegenerative disorder that affects about one in 70,000 births. Because it’s rare, many physicians are unfamiliar with it and its treatment. This could pose a problem, especially in an emergency. If your child has Sanfilippo syndrome, working with his or her primary care physician to develop…

Children with Sanfilippo syndrome frequently have trouble sleeping. To help them rest better, be more alert and potentially reduce daytime behavioral issues, you may want to practice sleep hygiene techniques with your child. Sanfilippo syndrome and sleep disturbances A survey of 141 parents and caregivers of children with Sanfilippo…