What is Sanfilippo syndrome?
Sanfilippo syndrome is an inherited metabolic disorder caused by missing or defective enzymes required to break down sugar chains into simpler molecules. This results in damage to organs, physical limitations and mental development. There are 4 types (types A-D) based on the enzyme deficiency.
How do members experience Sanfilippo syndrome?
Top 5 symptoms reported by people with Sanfilippo syndrome*
Common symptoms
How bad it is
What people are taking for it
Common symptom
Fatigue
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Depressed mood
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Pain
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Anxious mood
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Stress
How bad it is
What people are taking for it
Nothing reported yet
*Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Top treatments taken by people for Sanfilippo syndrome*
Who has Sanfilippo syndrome on PatientsLikeMe?
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 3 | |
| 20s | 3 | |
| 30s | 2 | |
| 40s | 1 | |
| 50s | 2 | |
| 60s | 1 | |
| 70+ | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 7 | |
| Female | 4 |