A lysosomal storage disease caused by a missing enzyme or low enzyme production . Storage effects every cell and function of the body in time . Not approved treatment as of 2019, terminal usually in 2 decade of life for most. Attenuated forms and Types C and D generally live longer .

There are 105 people in the Sanfilippo Syndrome map

Sanfilippo Syndrome life expectancy

What is the life expectancy of someone with Sanfilippo Syndrome?

6 answers
Celebrities with Sanfilippo Syndrome

Celebrities with Sanfilippo Syndrome

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Is Sanfilippo Syndrome hereditary?

Is Sanfilippo Syndrome hereditary?

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Is Sanfilippo Syndrome contagious?

Is Sanfilippo Syndrome contagious?

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SANFILIPPO SYNDROME

Synonyms:
MPS III, mucopolysaccacharidosis Type 3 , Sanfilippo Syndrome,

Types:
Lysosomal storage disease, metabolic

SYSTEMS AFECTED

Circulatory system
Circulatory system
Digestive system
Digestive system
Immune system
Immune system
Lymphatic system
Lymphatic system
Muscular system
Muscular system
Nervous system
Nervous system
Respiratory system
Respiratory system
Skeletal system
Skeletal system

Symptoms

  • Reoccurring repiratory illness, Hyperactivity, cognitive delay and or decline , large head, insomnia , corse facial features and hair, hydrocephalus , seizures, vision issues , toileting, loss of motor skills, contractures, movement disorders

Treatments

  • Trials only with Gene therapy and Enzyme Replacemebt therapy for Types A and B
  • Substrate reduction therapies help for some with genistein isoflavones and Miglustat / Zavesca ( used in Gaucher ) works with secondary storage in Sanfilippo .
  • Trehalose sugar also has an autophagy effect if tolerated orally and is being trialed via IV late 2019-2020. By Team Sanfilippo Foundation in partnership with Seelos Therapuetics .
  • Natural treatment of Sanfilippo Syndrome

    Is there any natural treatment for Sanfilippo Syndrome?

    4 answers
    ICD9 and ICD10 codes of Sanfilippo Syndrome

    ICD10 code of Sanfilippo Syndrome and ICD9 code

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    Living with Sanfilippo Syndrome

    Living with Sanfilippo Syndrome. How to live with Sanfilippo Syndrome?

    4 answers
    Sanfilippo Syndrome diet

    Sanfilippo Syndrome diet. Is there a diet which improves the quality o...

    5 answers

    Stories of Sanfilippo Syndrome

    STORY
    Sanfilippo Syndrome stories
    Sanfilippo Syndrome stories
    Was 14 years old in 2005 when he gained his wings MPS/sanfilippo/type A
    Sanfilippo Syndrome stories
    Sanfilippo Syndrome stories

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    Sanfilippo Syndrome forum

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    Statistics of Sanfilippo Syndrome

    2 people with Sanfilippo Syndrome have taken the SF36 survey. Mean of Sanfilippo Syndrome is 1160 points (32 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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