Massage Therapy for Sanfilippo Syndrome

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 involve a mutation in a gene encoding for an enzyme involved in the breakdown of a large sugar molecule called heparan sulfate. Without the correctly functioning enzymes, heparan sulfate builds up inside cells, leading to the symptoms of the disease.

What is massage therapy?

Massage therapy is a technique where a person manipulates the soft tissues of a patient’s body, including their skin, muscles, tendons, ligaments, and other connective tissues. It can promote wellness and help manage medical conditions.

Massage therapy can take many different forms and focus on different aspects of health. Techniques may range from light touches to deep pressure. Massage can be for general stress relief and comfort or be more focused or specialized, such as sports massage or deep tissue massage to aid in flexibility and movement.

How can massage therapy help your child?

Children with Sanfilippo syndrome lose strength and flexibility as their disease progresses. The loss of flexibility can lead to stiff joints that do not extend fully. This can impair movements such as walking. The loss of strength in the torso combined with possible deformations in the bones of the spine can lead to scoliosis.

Massage therapy can help increase blood flow and loosen up connective tissue to allow joints to move more freely. Potentially, it could help scoliosis from getting worse. Massage therapy can also potentially reduce anxiety and the intensity of pain.

Who can perform massage therapy?

Caregivers can perform massage therapy at home but a trained massage therapist may be more effective at targeting problem areas and applying the correct amount of pressure. It is important for the person performing the massage to understand the patient’s disability as well as pain tolerance.

How can I find a massage therapist?

You can check with your child’s physician to see if they can recommend any particular therapist or practice. You can also check professional massage therapist association websites. For example, the American Massage Therapy Association has a therapist locator on its website.

Most states require massage therapists to be licensed, registered, or certified before being allowed to practice. You may want to research potential therapists to find out their qualifications and level of experience working with children with disabilities.

What can I expect during a session?

The length of a massage therapy session can vary depending on the type and frequency of the massage. Some may only be short intense sessions lasting 10 to 15 minutes while others may last as long as 90 minutes.

The therapist may begin by doing an evaluation to locate painful and tight spots, and figure out how much pressure your child can handle. They may need to rely on you to judge your child’s comfort level if they have communication issues. They will likely discuss what issues your child is having and what techniques they plan on using.

Your child will most likely lie on a table while the therapist manipulates their joints and tissues. It is also possible to receive some forms of massage in an upright position.

Are there any risks?

Massage therapy has relatively minor risks, especially if performed by a trained professional. However, injuries to nerves or bones, and blood clots have been reported in some patients. Certain types of massage may be slightly riskier than others due to the level of pressure being applied.

Your child may feel slightly sore after the therapy and should rest and drink plenty of fluids. Massage therapy is not a replacement for standard medical care. You should inform your doctor in case there are potential risks to this therapy due to your child’s medications or particular symptoms.

Last updated: March 9, 2021

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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.