An 18-year-old from Ilkeston, Derbyshire, is speaking out about her life with sickle cell disease, a genetic condition that means she relies on regular blood transfusions to survive. Rita Ramos undergoes treatment every six weeks at Nottingham City Hospital, alongside frequent blood tests and daily medication, to manage the complex illness.
Sickle cell disease is a group of inherited blood disorders affecting haemoglobin, the protein in red blood cells that carries oxygen. This causes red blood cells to become stiff and crescent-shaped, leading them to get stuck in small blood vessels. For Rita, this can manifest as debilitating pain, which she describes as feeling like 'someone is stabbing me non-stop', along with extreme tiredness and breathing difficulties. A recent crisis even left her unable to walk, requiring physiotherapy to regain mobility.
Beyond the physical challenges, Rita also faces social hurdles due to a lack of understanding about her condition. She explains that people's sympathy and misconceptions have sometimes hindered friendships and her ability to participate in activities like sports and dance. Rita is keen to dispel the notion that individuals with sickle cell disease are 'fragile', asserting that they are 'really strong people'.
Rita is a passionate advocate for blood donation, highlighting its direct impact on patients like her. She encourages the public to donate, stating that a single donation can 'help one or two people who really need it'. Her experience underscores the continuous demand for blood products to support those living with chronic conditions.
Hannah Kadiki, a haemoglobinopathy lead specialist nurse at Nottingham University Hospitals NHS Trust, has supported the Ramos family for four years and regularly sees multiple sickle cell patients. Ms Kadiki acknowledges a significant public knowledge gap regarding sickle cell disease, often necessitating outreach and training for healthcare professionals, including GPs and staff in supported living homes. She stresses that 'knowledge is power' in ensuring patients receive appropriate care.