"Receiving blood literally saved Cianna's life"
Cianna is 13 and has sickle cell. Her mum, Haley, shares her daughter’s story. Many people with sickle cell disorder have the Ro subtype and need regular transfusions.
Sickle cell is one of the most common genetic disorders in the UK. It affects 15,000 people and more than 300 babies are born with the condition each year. Sickle cell is an inherited blood disorder, affecting the haemoglobin in red blood cells and making them misshapen. This means it’s hard for the red cells to move smoothly through blood vessels. If the cells stick together they can block vessels, causing excruciating pain (called a crisis). Other symptoms are anaemia and organ damage. Blood transfusions help to reduce and prevent a severe crisis.
“We received Cianna's diagnosis when she was three days old. She is now 13 years old and is such an inspirational young lady. Cianna is a natural creative and enjoys making art, particularly pen and digital illustrations. She also loves spending time with family and friends and listening to music.
“As much as we have tried to ensure that Cianna's life is not impacted too much, it is inevitable, with a serious health condition, to always be alert and put preventive measures in place.
(Photo: Cianna was diagnosed with sickle cell when she was three days old)
“Cianna didn’t experience her first crisis until she was almost five and for several years after she was regularly admitted to hospital. This impacted school and friendships and Cianna was not able to do too much. Every day we have to consider the triggers that could cause a crisis and make conscious decisions as to what we can do to prevent them. (These include) hydration, staying warm, not getting stressed or anxious, eating well, not doing too much exercise and recognising symptoms early if they do occur."
Cianna has received three transfusions. Receiving blood literally saved her life. We are eternally grateful for everyone that has donated blood. The difference it makes is priceless.
Living with sickle cell
“Now that Cianna is older, it is easier for her to understand the importance of taking care of herself, but she also has to decide whether or not to take part in activities just in case it does trigger a crisis.
"For a 13-year-old this is really difficult, especially when all of her friends are doing something as a group. We all do our best to make sure that Cianna does not miss out and will adapt plans that will keep her safe and well.
“Cianna has received three transfusions. Receiving blood literally saved her life. We are eternally grateful for everyone that has donated blood. The difference it makes is priceless.
Many people with sickle cell disorder have the Ro subtype. This is because sickle cell more commonly affects people from black ethnic backgrounds where the Ro subtype is more common.
Many sickle cell patients require ongoing blood transfusions, sometimes for the rest of their lives. If a patient with sickle cell disorder is Ro, ideally they should receive blood of the same subtype. There has been an increase in the number of people with sickle cell and as a result, the demand for Ro blood has grown.
"There is still a huge lack of understanding around sickle cell and many families affected by it have to constantly explain the severity of it and how it impacts their life to teachers, employers and so on. Cianna has never let sickle cell hold her back and continues to aspire to start her own business very soon."
