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What are the best treatments for Sanfilippo Syndrome?

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Sanfilippo Syndrome treatments
5 answers
As of now, 2019, there are no proven treatments for Sanfilippo Syndrome.. There are many trials underway, gene therapy and ERT being the two biggest, but so far we have nothing solid as a treatment. Your best bet is to keep your child as healthy as absolutely possible, being sure to do lab work regularly to make sure their whole body is well enough to fight what is to come.
Posted Nov 6, 2019 by TSF Inc Team Sanfilippo Foundation
There are no treatments for Sanfilippo Syndrome to date. The best treatment is to treat the individual symptoms caused by the disorder.
Posted Jan 1, 2018 by Danielle 3160
Substrate reduction therapy is only treatment available with Genistein presently. Managing symptoms as they occur. Trials for ERT and Gene Therapy are currently taking place
Posted Feb 25, 2019 by Patty Jesse 3000
Genistein, Ambroxol, there is no known cure.
Posted Nov 3, 2019 by Anne-marie 2500
I have no idea other than natural things.
Posted Dec 27, 2019 by babbey 300

Sanfilippo Syndrome treatments

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What is the life expectancy of someone with Sanfilippo Syndrome?

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Celebrities with Sanfilippo Syndrome

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Is Sanfilippo Syndrome hereditary?

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Is Sanfilippo Syndrome contagious?

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ICD10 code of Sanfilippo Syndrome and ICD9 code

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Is there any natural treatment for Sanfilippo Syndrome?

4 answers
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Stories of Sanfilippo Syndrome

SANFILIPPO SYNDROME STORIES
Sanfilippo Syndrome stories
DIAGNOSING EMILY. A JOURNEY WITH SANFILIPPO SYNDROME
Emily was born a perfectly healthy, 8lb 12oz full term baby girl. She progressed typically until around 3.5yrs old we thought her speech should be a bit more developed than it was. She had also developed what we assumed to be ADHD. Em's first special...
Sanfilippo Syndrome stories
ABBY WALLIS
Abby was thought to have PDD-NOS until October of 2017 when she was diagnosed with Sanfilippo Syndrome-type A. She is 22 years old.
Sanfilippo Syndrome stories
ANTHONY HUDSON
Was 14 years old in 2005 when he gained his wings MPS/sanfilippo/type A
Sanfilippo Syndrome stories
DIAGNOSIS
Reagan was diagnosed at age 3 with MPS III A. Reagan has some hearing loss and speech delay. Reagan is currently involved in a Gene Replacement Therapy Trial.
Sanfilippo Syndrome stories
HEATHER ASHLEY
My daughter was diagnosed with Sanfillippo Syndrome 3 a month after my son passed away at the the age of 26 days old. He was on life support and we has to disconnect life support due to him needing a heart and lung transplant and his organs were fail...

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