“People look at you and think you look fine, but they don’t understand the pain and the trauma along with the many trips to A&E.”
Loury Mooruth was born with Sickle Cell Anaemia. The 62-year-old agreed to speak about her experience of living with this condition at the Walsall Together Partnership Board last week and to share her story on #WorldSickleCellDay today.
In February, Loury became one of the first people in the UK to receive Crizanlizumab. This is a new drug treatment for Sickle Cell Disease and the first of its kind in more than two decades.
Growing up, Loury, who lives in Walsall, explained that she was always ill and in pain. Due to little being known about the condition at that time, it took a long while for a diagnosis of Sickle Cell to be made.
She suffers chronic painful episodes known as Sickle Cell crises which result in her having to spend much of her life in and out of hospital.
“Sickle cell has been part of my entire life. People look at you and think you look fine, but they don’t understand the pain and the trauma along with the many trips to A&E,” she said.
“When I have a sickle cell crisis, it’s like someone has a knife and they are slicing it through my joints – particularly my hips and legs.”
Loury said that when she does have to go to A&E trying to explain her condition to the attending staff often leads to delays in getting the appropriate treatment.
“When I go into a sickle cell crisis and have to go to A&E I try to explain that I have Sickle Cell and that I need oxygen and pain relief as quickly as possible, but this doesn’t always happen. They make you wait for blood results to come back before they begin treatment. When one is in chronic pain this can feel like forever.
“I don’t like going into hospital and do my best to manage my pain at home but sometimes it is just so unbearable I need some help.”
When Loury was given the opportunity by her Haematologists at City Hospital to be one of the first people in the UK to receive a new medication, she jumped at the chance. This drug could reduce the frequency of sickle cell crises and is expected to reduce hospital admissions.
“I was over the moon when I knew I was going to have this new drug. I had done a lot of research and knew that it could literally be life-changing for me and my family,” she said.
“It is very early days but I am definitely feeling the benefits of it. I feel less tired and have little bursts of energy that I have never experienced before. Since taking Crizanlizumab I have only had one crisis. Previously I would have had a few over a period of months.”
Loury is keen to point out this is not a cure and because of Sickle Cell she has several disabilities.
She is passionate about raising awareness of the disease and supporting others who have it.
Loury is a Board member of a family support service for children, young adults, and adults with Sickle Cell and Thalassaemia and a patient voice for East and West Midlands.
In this role, she is an advocate for raising awareness and supporting and helping others to manage their illness to try to prevent future health conditions as a result of the disease.
Loury believes that a holistic and joined-up approach to caring for people with Sickle Cell in the community where possible would have a huge positive impact on both the physical and mental health of those with Sickle Cell.
Walsall Together has committed to looking into how it can improve access to services in the community for people like Loury.
To find out more about Sickle Cell visit: https://www.sicklecellsociety.org