Heartbeat: Raising awareness of sickle cell wonder drug
November 24, 2022
In February we became the first Trust in the region to administer the crizanlizumab drug to sickle cell patients.
The new treatment reduces chronic pain which leads to trips to A&E and dramatically improves the quality of life for patients.
Now seven months on, Loury Mooruth, who was one of the first to receive it, is pleased with the results the drug is having so far and her journey has been documented by a filmmaker so that she is able to raise awareness of the treatment.
She said: “Since I started on crizanlizumab, I have had one crisis which was in March. It lasted five days – normally they last 10 and I will have a major one every two months.
“One thing I’ve noticed is that I will have a feeling every two days or so that I am about to have a crisis. This lasts for five minutes then disappears. There’s definitely an improvement and I feel I have come on leaps and bounds.
“I’ve suffered for years and years thanks to this disease and as a result have a number of health issues. I definitely feel had I had this drug when I was younger, I wouldn’t be suffering as much with the various ailments I have. It’s important that people with the disease are aware of this treatment and the film that will be produced will go across social media so that sufferers can see first-hand how it is helping me.”
As many as 5,000 people will be treated over the next three years with the new drug.
Loury said previously about the disease: “It’s 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 ripping it through my joints – particularly my hips and legs.
“Whenever I thought about having this new drug it brought tears to my eyes. I am so excited and over the moon because it is literally lifechanging for me and my family. I really want to encourage other eligible people with this disease to come forward and get this drug”.
Crizanlizumab, delivered by a transfusion drip, works by binding to a protein in the blood cells to prevent the restriction of blood and oxygen supply that leads to a sickle cell crisis.
Patients with sickle cell suffer from monthly episodes, making it difficult for people to continue in their jobs or other everyday activities.
The drug is expected to reduce the number of times a sickle cell patient needs to go to A&E by two fifths.
The Trust is one of the 10 dedicated centres to treat sickle cell disease across the country. Patients will be able to access the new treatment through their consultant at one of these clinics regardless of where they live in the country.