Loury Mooruth, 62, from Walsall was born with Sickle Cell Anaemia.
Loury came to the Walsall Together Partnership Board to share her story with us and to raise awareness of its importance so as to better understand Sickle Cell. Also, by being better informed, we will be in a better position to deliver the right care, in the right place and at the right time.
Growing up she told us that she was always very ill and in pain. Due to little being known about sickle cell at that time, it took very long for a diagnosis of Sickle Cell to be made.
Loury suffers chronic painful episodes known as Sickle Cell crises. This results in her having to spend much of her life in and out of the hospital.
In February she 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 over two decades.
As part of #WorldSickleCellDay, on Sunday 19 June, Loury has kindly agreed to let us share her story with you….
“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.
“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.”
She explained that when she does have to go to A&E the people looking after her don’t always listen. 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.
“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.”
One thing that she wanted to say is this is not the cure and because of Sickle Cell she has several disabilities.
Loury is passionate about raising awareness of the disease and supporting others who have Sickle Cell.
She 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 also supporting and helping to manage their illness in order to prevent as much as possible 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.
As a partnership, we have committed to looking into how we can improve access to services in the community for people like Loury.
To find out more about Sickle Cell visit: https://www.sicklecellsociety.org
