The complex reality of living with Sickle Cell | Roundtable | Before Our Friends Die #48

The Akhi & Saltfish Digital Network.

Friday, 11 October 2024 - 1 hour 38 minutes

On Friday 4th October 2024, the akhi&saltfish Digital Network hosted perhaps our most important conversation yet, a Sickle Cell Community Roundtable discussing the experiences, challenges, and successes of those living with or dedicating their lives to supporting Sickle Cell Warriors.

Our conversation is authentically steered by the participants of the roundtable who dive deep into their experiences, sharing their toughest battles, inspirational successes and unwavering resilience.

Expect to hear:

Expert medical insights into what Sickle Cell is and community insights into what advocacy has looked like over the past 50 years.

The experiences of parents of children with Sickle Cell, the importance of awareness and ensuring your child is empowered when navigating their healthcare.

Why educators and institutions need to do more to understand and advocate for Sickle Cell Warriors.

A legal lens on Sickle Cell and the responsibility of organisations to do more.

Recent developments in care and what we can do moving forward to get even better.

Plus much more!

A huge thanks goes out to our roundtable contributors, we couldn’t have done it without you!

Amanda Joseph - Sickle Cell Warrior and Medical Expert
Catherine James-Oliver - Sibling of Sickle Cell Warrior
Christine Collymore – Senior Lecturer in Health and Social Care at the University of Northampton
Florence Ampofor-Anim - Parent of Sickle Cell Warrior
Gabriella Van Beek - Operations Manager, Healthwatch Northamptonshire
Gifty – Project Manager, West Northants Council
Kamara James – Lived experience caring for a parent with Sickle Cell.
Memory Mwanza – Parent and Author of Living with Sickle Cell Children: The Voice. Available on Amazon: https://amzn.eu/d/brplHOH
Morcea Walker – Community Advocate
Dominic Carrington – Senior Lecturer in Law at the University of Northampton
Rochelle Raheem – Project Manager of Live Well with Sickle Cell at Northamptonshire Carers
Yabs Cudjoe – Sickle Cell Warrior
Resources:
Living Well with Sickle Cell: https://www.northamptonshire-carers.org/sickle-cell-disease
Join the Anthony Nolan stem cell register: https://www.anthonynolan.org/help-save-a-life/join-stem-cell-register
Learn more about Sickle Cell: https://www.anthonynolan.org/patients-and-families/blood-cancers-and-blood-disorders/what-a-blood-disorder/sickle-cell-disease
Blood transfusions help those with Sickle Cell, become a blood donor now: https://www.blood.co.uk/

With thanks to Dr Marcella Daye and Evelyne Mulinge for their support in organising this event.

HAPPY BLACK HISTORY MONTH!

Our JADE Conversation with the University of Cambridge’s FIRST Black Professor, Jason Arday is available here: https://youtu.be/AEqLkl-gZCA?si=sD-NQLJJBKHosWGa

Engage, comment, like, share and let us know your thoughts. We'd love to hear from you. We can be found on Instagram @beforeourfriendsdie and X @akhiandsaltfish and don’t forget to get in touch, let us know how you’re finding it and ask questions at: akhiandsaltfish@gmail.com.

Watch all episodes in the Before Our Friends Die archive now: https://youtube.com/playlist?list=PL4Kd9OatIp5-61wFD0DBQYSofEcUphkr1

For more inclusive stories, visit our playlist: https://www.youtube.com/playlist?list=PL4Kd9OatIp5_NG_VxAUUC1diwCvfwR_nW

YouTube: https://www.youtube.com/channel/UC69nG-YtZpPDwf3q8ipCZew

Spotify: https://open.spotify.com/show/5T7f14xql1O0z2sQQSwKDd

Apple: https://podcasts.apple.com/us/podcast/akhi-saltfish-present/id1607369285?ign-itscg=30200&ign-itsct=podcast_box_link

Any other: https://anchor.fm/akhiandsaltfish

Before Our Friends Die is a podcast on the akhi&saltfish Digital Network. The concept is: "Before Our Friends Die, we want them to know about..." and you, the audience, are our friends. Sometimes it's about having the conversations that often get overlooked yet feel urgent. Equally, it can be about speaking to someone who is where we want to be and asking them how they did it. The Network also features:

- SOFA SENSE'S, where we talk about and to those in, the fight world!

- Cool. Fine. Done. Wicked. A podcast about music we’re passionate about.

If any of those catch your interest, subscribe and stay tuned, we’ve got more coming your way!