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What is the life expectancy of someone with STXBP1?
Life expectancy of people with STXBP1 and recent progresses and researches in STXBP1
Normal life expectancy unless seizures become untreatable or uncontrolled
Posted Mar 26, 2017 by Aparker77 1002
Depends on seizures. Some kids live up to be 18-20 sometimes even 30+ others not so long but it depends on seizures wether their controlled or not
Posted Jun 24, 2018 by Jaylenesmommy 2500
the process in my experience with my daughter and also after speaking to many many parents, is that after puberty or soon after some skills begin to reverse. Specifically walking and swallow. Some issues with bowel motility also occur along with excessive sleepiness. Our daughter passed away at age 18 despite excellent medical care and being a fairly high functioning stx child. Our feeding tube assisted us in prolonging her life for the last three years. We also had an excellent team that assisted us in making sure that she was in no pain and had no concerns.
Posted Jul 9, 2018 by Elizabeth 600
Meu filho diagnosticado com STXBP1 tem 39 anos. Com o passar dos anos as convulsões ficaram mais controladas, mas tem muita sonolência e é totalmente dependente.Mas a saúde em geral é muito boa.
Posted Dec 22, 2022 by Carmem Lucia 200
My son lived until he was 38. He died from a choking incident. He had issues with swallowing and chewing.
Posted Feb 13, 2024 by Joshua 600
Translated from spanish
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I think that there are cases of more than 30 years of life, and more. I know of cases of 22 years
Posted Mar 26, 2017 by Julio Angel 1000
