Personal experiences
Here you will find different stories and experiences from people who live with SCD.
Below are videos featuring people from around the world sharing their experiences with red blood cell disorders, offering insight into how they manage daily life and cope with the condition.
The Invisible Warrior…… I’m fighting the enemy within
In this piece, Louisa and members of the Invisible Warrior team share the complex realities of living with Sickle Cell Disorder (SCD). They highlight not only the physical challenges, but also the mental and emotional trauma that frequently accompany the condition—difficulties that are too often compounded by a lack of understanding and awareness within wider society. The mission of Invisible Warrior is to shine a light on these hidden struggles, raise awareness, and ultimately drive change towards better support and improved outcomes for those affected by SCD.
Sickle Teller - Sickle Cell & I
Through her personal story, Patricia explores the challenges of living with sickle cell disease from childhood into adulthood, revealing how the condition shapes her everyday life, travel experiences, and personal well-being.
Being Heard
This film was developed in collaboration with patients, carers and staff from King's College Hospital and Guy's and St Thomas' NHS Foundation Trusts in response to the All-Party Parliamentary Group's No One's Listening report. This report came after an inquiry into avoidable deaths and failures of care for those with affected by sickle cell.
Warrior Stories: Ashley
Diagnosed with Sickle Cell Disease at just one year old, Ashley has navigated the unique challenges of living with the condition. Like many living with Sickle Cell, she finds that home-based care offers her greater comfort and more personalized support
Untold Stories of Sickle Cell Disease - Faith
Faith shares her experiences as a young adult and student living with sickle cell disease, discussing the pain, fatigue, and daily challenges she navigates while balancing her studies and personal life
Living With Sickle Cell Disease
This video features a range of stories of people living with sickle cell disease, exploring how they discovered their condition, the difficulties they’ve faced, and how they manage it day to day
Anne Alfa Sickle Cell Story
Patient advocate Anne Alfa shares the challenges she has faced living with sickle cell disease. She also discusses her future plans and offers encouragement to others with the condition, emphasizing the importance of staying positive and resilient.
For more experiences please see the below links
Sickle Teller - Link
Aliya's Instagram Blog - Link
Eleasha's Instagram Blog - Link
Elle's Instagram Blog - Link
Lets Talk Sickle Cell Blog - Link
SCD Foundation Blog - Link
Sickle Cell Society - Link
NHS Trust Blog - Link
Patient Public Voice Group
Voices of patients and the public shape the work of the West London Haemoglobinopathy Coordinating Centre (HCC).
The work of the HCC is steered by the Public and Patient Voice group. The group meets once a month normally on the last Thursday night of the month, but the timing of this is may to change. The group discusses the work of the HCC and how the resources of the HCC can be used to improve patient outcomes and which areas should be worked on as a priority. If you would like to attend the meetings please contact Ralph Brown, Georgia Adebowale and Eni Kuseju by clicking here
The PPV group members have been involved in patient feedback sessions to Haematology departments and Emergency Departments
The PPV group also assist the West London HCC with suggesting helpful webpages such as citizen advice for the patient public
The PPV groups monitoring of emergency metrics at the specialist hospitals of the HCC has resulted in improvements being made to these services.
Members of the PPV group have also contributed to national reviews into Sickle Cell care
The PPV group has also been involved in the set-up and distribution of the patient survey for the region
The group is chaired by Patrick Ojeer a knowledgeable campaigner on the improvement of Sickle cell services.
You speak, we listen
Improving Sickle Cell Services Together - a page dedicated to the work that has been done to improve sickle cell care and services
See some of the work from other PPV members
Let me firstly introduce myself to you all, My name is Laurel Brumant-Palmer,
I am 54 years old and was diagnosed with Sickle Cell Disease at the age of 3 years old. I want to share my story with the world because I think it is really selfish to keep it to myself. The blessings that I have received in my life are almost unexplainable. I am where I am and I am shocked that I am where I am. Why? Because I died several times in my heart my mind and my soul.
I really want to inspire and encourage everyone who is struggling and suffering constantly with regular admissions to hospital and all the struggles mentally and physically that come with suffering from Sickle Cell Disease.
I have struggled and at times I just wanted to give up especially when experiencing so many painful crisis and having them constantly control my life.
My story will tell of my struggles as a teenager when nobody had heard of Sickle Cell Disease and how I dealt with major challenges in my adult life.
How did I get to the place that I am at presently? It was hard and it is still very difficult but a happy, positive, fighting spirit filled with enormous faith and perseverance has helped me on my journey.
I am so excited to share my story with you and hope that someone will be able to identify with my experiences and that I will be able to reassure and help individuals to have the confidence to believe in themselves. I suffer from Sickle Cell Disease but Sickle Cell Disease is not me.
To see Laurel’s artwork click here
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 group also shapes the HCC’s education programme, co-designing the following education sessions which are linked here:
19.01.2025 Sickle Cell: Cardiac issues and management
15.01.2025 Thalassemia: Overview and Management
11.10.2022 Sickle Cell and Dentistry
17.06.2022 Renal Function and Sickle Cell
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