16# مقابلة كاملة: ازاي تكوني ام لطفل متشخص بمرض غير متوقع (مع ريهام بدوي)

في الحلقة دي من قهوة وشاي بلبن دردشنا معا/ريهام بدوي عن رحلتها في اكتشاف ان اتنين من اولادها عندهم مرض  جيني نادر وازاي الاكتشاف دا غير حياتها وحياة اسرتها بالكامل تواصلوا مع ريهام على Website: ⁠www.aldhope.org⁠ YouTube: ⁠https://youtube.com/@aldhope?si=MuqfYlakB7fJBBph⁠ Facebook: ⁠https://www.facebook.com/aldshopes?mibextid=LQQJ4d ⁠ Instagram: aldhope LinkedIn: ⁠https://www.linkedin.com/company/aldhope/⁠ Tiktok: ⁠https://www.tiktok.com/@aldhope?_t=8pTYlQ8tMl4&_r=1 (English)⁠ ⁠https://www.tiktok.com/@hurryberry?_t=8pTZ2LPfQzl&_r=1 ⁠(Arabic) X: @hurryberry ⁠Snapchat⁠: https://snapchat.com/t/gclVTWml مصادر من الحلقة ⁠https://rarediseases.org/ ⁠ ⁠https://donutthatroared.com/⁠⁠https://www.goodreads.com/book/show/42608264-adriana-s-adrenal-insufficiency ⁠ National Health Service "NHS" ⁠https://www.nhs.uk/ ⁠ John Hopkins Medicine ⁠https://www.hopkinsmedicine.org/ ⁠ Roadmap for this talk Introducing our guest 3.31 Get to know Riham 4.49 Riham’s story of discovering her sons’ disease 18.47 Another dimension of the discovery 20.38 Second son diagnosis and an important decision 27.53 How much did Riham choose to share with her sons about their condition and how much do they know? 30.44 The bee and the fly 32.30 Different children have different needs 36.41 How to treat the disease as part of the family’s life rather than build the family’s life around the illness 41.55 Some red flags for parents and doctors to look more deeply 43.06 The moment when Riham’s life took an unexpected turn 43.42 The vision behind Riham’s organization 49.12 What role can teachers play if a student has a known health condition 53.27 How one teacher’s support can make all the difference 58.17 How stories can encourage children to undertake scary procedures like the MRI 1.01.16 Calling all doctors to think zebras as well as horses 1.06.22 Another important way teachers can help children with diseases affecting their brains 1.08.53 The value of having a community for support 1.16.30 What is the worst thing you can say to someone going through extraordinary circumstances? 1.21.03 Resources for teachers and parents to raise awareness on rare diseases 1.26.46 How rare are these illnesses anyway? 1.27.25 How early diagnosis can make a difference for families and children? 1.28.22 Riham’s hope for our Arab communities 1.32.08 The potential harm of keeping illness a secret 1.34.12 The occasional value of logic over emotion لو في موضوع حابين اننا نتكلم فيه او عندكوا اي تعليق على الحلقة او حابين نستضيفكوا تتكلموا عن تجربتكوا ابعتولنا على ⁠[email protected]⁠  لو عجبتكم الحلقة وعايزين تسمعوا حلقات اكتر please subscribe ⁠ https://open.spotify.com/show/3IBmcYI3Wp9XknfvXdZerq⁠  تابعوا صفحاتنا عل سوشيال ميديا: Youtube ⁠youtube.com/@QhwShybLbn⁠   Instagram⁠ instagram.com/qhwshyblbn/⁠  @qhwshyblbn  Facebook⁠ facebook.com/profile.php?id=61564721505407⁠   البودكاست دا مكانش هيحصل من غير صحابنا الموهوبين Market Formers⁠ https://marketformers.com/⁠ led by the amazing Sherif Osman Music by @saraelsebaiee⁠ www.facebook.com/ElsebaieeMusic⁠ Logo by Shorouq Ebrahim مهما عبرنا عن امتنانّا مش هيكفي. بنحبكوا.