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What is the life expectancy of someone with Sanfilippo Syndrome?
Life expectancy of people with Sanfilippo Syndrome and recent progresses and researches in Sanfilippo Syndrome
The life expectancy you'll see when you Google says second decade of life. This is very misleading. We have people of all ages pass from Sanfilippo Syndrome. I do not think it's a great idea to get hung up on this. We have children less than 10, and then adults in their 50s. Many things play a role in this part of the illness. There is no clear cut answer.
Posted Nov 6, 2019 by TSF Inc Team Sanfilippo Foundation
The life expectancy for a typically developing Type A child is mid to late teens. A child may have an attenuated version and live a much longer life, or a more severe version and suffer much younger. There are many variables and I always encourage parents to remember that their child is individual and to try as hard as they can to not focus on statistics like this that are not written in stone.
Posted Jan 1, 2018 by Danielle 3160
Typical kids live well into their teens and many are living into second decade of life today with a rare few living into third and fourth decade of life . Keeping a healthy respiratory system , liver and heart are crucial
To long life and keeping mobility as long as possible is of great benefit to overall health . Seizures need to be controlled and are often time secondary causes by increased intracranial pressure . Diamox or shunting will help decrease fluid levels for a healthier life !
To long life and keeping mobility as long as possible is of great benefit to overall health . Seizures need to be controlled and are often time secondary causes by increased intracranial pressure . Diamox or shunting will help decrease fluid levels for a healthier life !
Posted Feb 25, 2019 by Patty Jesse 3000
Sanfilippo's will die in their early teens or early abult hood but medical science is revolving all the time and Sanfilippo's are living longer.
Posted Nov 3, 2019 by Anne-marie 2500
