Guide's for Living With Sickle Cell

Kye's Sickle Cell Guide

Kye Gbangbola was Chair of the Sickle Cell Society, the award winning national patient organisation in the UK, for nearly a decade. He received widespread praise for his leadership, advocacy, and for his powerfully inspiring and motivational speaking, and lectures.

Moved, amazed, and outraged! This is a game changer for sickle cell warriors of all ages living with the condition, their families, and carers. The Sickle Cell Guide provides an encyclopaedic knowledge of sickle cell disease, making it an essential read for medical professionals—from students to well seasoned consultants, medical directors, and policy makers. It quietly and humbly sets a new bar for books on sickle cell disease, of which there are few. The book may inspire many more individuals on their journey to change the impacts and outcomes of living with sickle cell disease, after decades of scientific and medical inequity and neglect.

To read his book "The Sickle Cell Guide—equity for patients" click here

 

The A-Z Of Sickle Cell Book

A‑Z of Sickle Cell Book – a child‑friendly ABC journey through sickle cell

Created by Lenneisha Ewers, inspired by her son Khari’s diagnosis with sickle cell disease at birth, A‑Z of Sickle Cell Book is a beautifully illustrated, alphabet-based guide designed for children aged around 5+. It introduces key facts about sickle cell disease—using the full A to Z format—to educate young readers and their families in an accessible, positive way .

Each letter in the book represents a concept or term related to the lived experience of sickle cell, making it both educational and memorable. Lenneisha shares her motivation: "it was difficult to find child‑friendly text… so that he can learn about his condition in a comprehensive way that a child can understand" .

The book is square-format, well-designed for young readers, and priced around £7.99–£9.99, depending on retailer. The site and social pages also feature heartfelt reviews:

“Who knew alphabets could be used in such remarkable ways…” — Natalia G.
“A book filled with insight in an easy to read way” — Denise F.

It’s a wonderful, engaging tool for parents, children, teachers, and anyone looking to raise awareness of sickle cell in a supportive, community-centered way.

Click here for more information

 

Living with Sickle Cell Disorder - a Guide for Patients

In June 2024, The Red Cell Network launched a comprehensive Guide to Living with Sickle Disorder, published to mark World Sickle Cell Awareness Day. This accessible resource is designed to be your go‑to companion for managing sickle cell disorder in the UK. It integrates practical advice—such as managing symptoms, accessing treatments, planning travel, and navigating welfare support—alongside links to trusted specialist resources for deeper info

Whether you're a patient, carer, or healthcare provider, this guide delivers essential support in one place.

Read here
Explore the full Living with Sickle Disorder guide

 

Living with Sickle Cell Disease - NHS Guide

If you’re living with sickle cell disease, this NHS page is a really helpful place to start. It breaks down practical, everyday advice on how to look after yourself, from preventing painful crises and managing pain at home, to reducing your risk of infections. It also covers important situations like travelling, pregnancy, and having surgery, so you know what to prepare for in advance. There’s clear guidance on the warning signs that mean you need urgent medical help, plus a personal patient story that many of us can relate to. Overall, it’s a great resource for understanding how to stay safe, plan ahead, and feel more in control of life with sickle cell.

click here for more information

 

A Parent’s Guide to Managing Sickle Cell Disease

If you’re a parent or caregiver of a child with sickle cell disease, the Sickle Cell Society’s “Parent’s Guide to Managing Sickle Cell Disease” is an invaluable resource. It explains what sickle cell disease is, the different types, and how your child may have inherited it. You’ll also find practical information on managing treatment, preventing crises, and navigating the day-to-day realities of living with the condition. The guide includes sections on how to support your child emotionally, how to work with healthcare professionals, and where to get extra help. For any parent wanting solid, trustworthy guidance, this guide offers clarity, reassurance, and actionable advice. Best of all, you can download the complete guide for free, making it a helpful reference for you, teachers or carers who support your child.

see the guide here