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