Medical Alert Cards for Sanfilippo Patients

Brian Murphy, Ph.D. avatar

by Brian Murphy, Ph.D. |

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Medical Alert Cards

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 may be helpful to quickly inform doctors, nurses, or emergency teams about your child’s condition and any special precautions that may be necessary.

What is Sanfilippo syndrome?

Sanfilippo syndrome is a rare genetic disorder that results in the buildup of heparan sulfate, a large sugar molecule in the body. Mutations in one of four enzymes, which work to break down heparan sulfate, cause the four different subtypes of Sanfilippo syndrome.

What are potential emergencies for patients?

A number of different symptoms or complications due to Sanfilippo syndrome may require emergency assistance.

As the disease progresses, many patients experience seizures. Not all seizures are emergencies, but those that last longer than five minutes or result in injury may require medical assistance.

The accumulation of heparan sulfate in the walls and valves of the heart can also lead to cardiac problems. Cardiorespiratory failure is the second most common cause of death in Sanfilippo syndrome patients so heart problems can quickly turn into emergencies.

Serious infections, such as pneumonia — the leading cause of death in patients with Sanfilippo syndrome — can also require urgent care at a medical facility.

Finally, physical and mental developmental delays can make patients more prone to accidents that could lead to emergency situations.

What are medical alert cards?

Medical alert cards are a way to quickly provide information to medical personnel in case of an emergency.

The cards usually contain personal information about your child, such as name, date of birth, and emergency contact information for you and their primary physician. A list of medications and dosages as well as any allergies should also be included.

The cards should contain information about Sanfilippo syndrome and any other conditions your child may have. Finally, it should include special notes about precautions and treatment considerations.

Why are medical alert cards important?

If your child needs emergency care, clinicians might not have a chance to look up medical records before starting treatment. Medical alert cards can quickly inform emergency personnel of possible life-threatening symptoms that may be associated with Sanfilippo syndrome, such as heart problems, and additional risks from different treatments such as anesthesia.

If your child needs anesthesia, it is important that physicians are familiar with possible complications. During anesthesia, your child may be more at risk of airway obstruction, weak breathing that results in high carbon dioxide levels in the body, heart complications, and abnormally high body temperatures. Because of all of these risks, medical professionals need to choose the anesthetic carefully and monitor the patient closely.


Last updated: March 2, 2021


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.