WATCH: Meet Theo is two and has Ohtahara syndrome, a condition that causes uncontrollable epilepsy and brittle bone disease. Both he and his family have benefitted from the Family Fund Mobility Support scheme, which will give vital support to eligible families raising a disabled, or seriously ill child under the age of three, that has significant mobility needs. The funding has generously been supported by Motability Scheme. Find out more about this support and check if you, or someone you know,
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WATCH: Meet Theo is two and has Ohtahara syndrome, a condition that causes uncontrollable epilepsy and brittle bone disease. Both he and his family have benefitted from the Family Fund Mobility Support scheme, which will give vital support to eligible families raising a disabled, or seriously ill child under the age of three, that has significant mobility needs. The funding has generously been supported by Motability Scheme. Find out more about this support and check if you, or someone you know,
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FacebookFamily Fund
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Rare Disease Video - Ohtahara Syndrome, Erica's Story - National Organization for Rare Disorders
Rare Disease Video - Ohtahara Syndrome, Erica's Story - National Organization for Rare Disorders
Jun 14, 2019
rarediseases.org
No te confundas entre el Sx de Ohtahara y el Sx de West, son cosas complicadas de memorizar, pero vale la pena para el ENARM! 🏥😵‍💫🧠 #medicina #educación #medstudent #doctor
2:34
No te confundas entre el Sx de Ohtahara y el Sx de West, son cosas complicadas de memorizar, pero vale la pena para el ENARM! 🏥😵‍💫🧠 #medicina #educación #medstudent #doctor
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TikTokleomedicina
LeoMed on Instagram: "No te confundas entre el Sx de Ohtahara y el Sx de West, son cosas complicadas de memorizar, pero vale la pena para el ENARM! 🏥😵‍💫🧠 #medicina #educación #medstudent #doctor"
2:34
LeoMed on Instagram: "No te confundas entre el Sx de Ohtahara y el Sx de West, son cosas complicadas de memorizar, pero vale la pena para el ENARM! 🏥😵‍💫🧠 #medicina #educación #medstudent #doctor"
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Emilia Embirucu | Neuropediatra | Neurogenética on Instagram: "A Síndrome de Ohtahara é uma encefalopatia epiléptica grave, com início muito precoce, geralmente nos primeiros meses de vida, e crises de difícil controle. Um dos achados característicos é o padrão de surto-supressão no eletroencefalograma. Entender a causa da síndrome é fundamental. Em muitos casos, ela está relacionada a condições genéticas, erros inatos do metabolismo ou canalopatias. Essa investigação permite direcionar melhor o
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Emilia Embirucu | Neuropediatra | Neurogenética on Instagram: "A Síndrome de Ohtahara é uma encefalopatia epiléptica grave, com início muito precoce, geralmente nos primeiros meses de vida, e crises de difícil controle. Um dos achados característicos é o padrão de surto-supressão no eletroencefalograma. Entender a causa da síndrome é fundamental. Em muitos casos, ela está relacionada a condições genéticas, erros inatos do metabolismo ou canalopatias. Essa investigação permite direcionar melhor o
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Instagramemiliaembirucu
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“他8岁了，不会说话，也还不会走路，经常癫痫发作。我希望有朝一日，他可以学会走路。” 一名妈妈对患病儿子的期盼，是如此的简单。 ——————————————— #医疗器材援助 作为父母的第一个孩子， Rayyan 在充满爱意和期待的环境下诞生。出生的当天下午，宝宝就出现手脚僵硬的情况，但当时新手妈妈不了解这是癫痫发作。过后，宝宝癫痫的情况持续，几乎每天都发生，妈妈立即向医生求助。 在宝宝大约3个月大的时候， 医生确诊他罹患大田原综合征 （Ohtahara Syndrome），也被称为早期婴儿癫痫性脑病。 这是一种罕见而且严重的癫痫病， 这疾病导致他的脑部瘫痪（Cerebral palsy）、发育迟缓、智力低于常人，而且经常癫痫发作。不管是冲凉、吃饭、还是睡觉，任何时候他都可能癫痫发作。 从此，Rayyan 需要长期服药控制病情。由于他无法说话和表达，父母也让他长时间穿戴纸尿片。尽管难过和难以接受 ，但家人从未放弃他。父母带他定期复诊，进行物理治疗和作业治疗，积极改善他的病情。 #坚强的男孩正努力学习行走 3岁前，他只能躺着，经过家人的引导和男孩的坚持不懈之后，3岁后，他慢慢开始学会了坐
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