Family fun day celebrates progress in care for sickle cell and thalassaemia patients

Patients and their relatives affected by two inherited blood disorders were treated to a special family fun day in Grangetown. 

Organised by colleagues in the Hereditary Anaemia Service at the University Hospital of Wales, the event at the Grange Pavilion saw people with sickle cell disease and thalassaemia take part in a host of activities from yoga to filmmaking to arts and crafts.

There were also education stalls and expert dietitians on hand to offer those in attendance advice on managing a balanced diet.  

The aim of the event was to bring together sickle cell and thalassaemia patients within both the adult and paediatric services in Cardiff and Vale University Health Board, to share their experiences of their disorders and see their clinicians outside of a hospital setting.  

The service was originally established in 1999 and based in Butetown Health Centre with only a handful of patients. But as sickle cell disease is the fasting-growing genetic disorder in the UK, the service is now funded by the Welsh Health Specialised Services Committee (WHSSC) and was renamed the Hereditary Anaemia Service. 

Sickle cell disease and thalassemia are life-threatening, life-limiting inherited genetic blood disorders which affect the haemoglobin in the red blood cells. This causes chronic anaemia which can cause damage to all the organs.  

Sickle cell complications can cause an obstruction in the capillaries resulting in extreme pain and necrosis (cell injury). Some patients receive regular blood transfusions.  

A spokesperson for the Hereditary Anaemia Service said: “Presently, there are approximately 90 patients in both the adult and paediatric service, with numbers quickly growing due to the changes in the diversity of our community. Therefore, as a service we need to be offering our patients and their families more support and advice to ensure they are able to live a healthy, pain-free life as possible.   

“We understand that the needs of the patients are not only clinical, but social. Enabling the patients and their families and friends to come together to feel they are not only supported by the team, but also engage with others in similar situations as themselves. This can empower them to have a voice and to not feel they are alone. 

“It was obvious to see that the day was a great success, as everyone was smiling and engaging in the activities. Mixed with educational stalls which the children especially found fun, it was a day which hopefully will be repeated on an annual basis. It’ll not only benefit the patients and their families, but increase awareness of sickle cell disease and thalassaemia as they are not widely known about in the general population.”