Home » Rare diseases » Easing the trauma for families affected by painful sickle cell disease

Hayley King

Founder, Cianna’s Smile

It was the traumatic experience Hayley King faced when she took her young daughter to hospital with her first major sickle cell crisis that prompted her to take action.

Cianna was diagnosed with the genetic condition when she was three days old but had her first major ‘crisis’, the excruciating pain that comes with the restricted blood flow sickle cell disease (SCD) causes, when she was five and was taken to hospital. For Hayley, the events of that day were a dramatic illustration of the lack of support for those living with the disease and their families and how poorly informed healthcare professionals (HCPs) were about SCD.

Cianna’s Smile

Despite Cianna displaying the tell-tale signs of a sickle cell crisis, they were told there was nothing wrong with her. “It was at that moment that I decided to do something to change this,” says Hayley.

Cianna’s Smile was subsequently established as a registered charity to raise awareness of SCD and offer support to parents and families. A main focus is on reducing the isolation families experience by running activity days, virtual coffee mornings, focus groups and carers lunches, with hopes to gain funding for a weekend away for families. Hayley emphasises: “We support the whole family because having a child or parent with SCD is one thing, but the effects are experienced by the whole family.”

Social challenges

The charity also raises funds, including a gala dinner, and “blood drives” advocating the importance of blood donation as people with SCD may need blood transfusions to prevent anaemia.

With SCD, red blood cells become sickle shaped and rigid, blocking blood flow and causing excruciating pain known as a sickle cell crisis. Some 15,000 people in the UK have SCD, which mainly affects people of African, Caribbean, Mediterranean and South Asian descent. The debilitating illness can lead to social challenges including anxiety, depression and isolation.

Inherited condition

The charity is developing a training programme for medical students about day-to-day life with SCD and educating people on how SCD is inherited. Hayley says: “It is traumatic seeing your child in pain and there is also the guilt I experience because it is an inherited condition.”

For Cianna, 14, and her family, SCD impacts daily life. “Every day as a parent I have to be hyper-vigilant, making sure that we are doing everything to prevent a crisis,” says Hayley.

The charity is also developing literature and online resources, supported by Global Blood Therapeutics (GBT), a company working to develop treatments for people living with blood-based disorders including SCD

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