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://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 qhwshyblbn@gmail.com
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Logo by Shorouq Ebrahim
مهما عبرنا عن امتنانّا مش هيكفي. بنحبكوا.