Stories

Year 12 student Tilly speaks with community pharmacist, Olabike, who has sickle cell disease (SCD) which means Olabike's red blood cells cannot carry as much oxygen and can cause blockages in small blood vessels, resulting in a sickle cell crisis.

Yvette is a painter, visual artist and textile designer who is based in London. She shares what life has been like growing up with Sickle Cell Disease and how she adapts her everyday living to manage this condition.

Robi was diagnosed with Congenital Dyserythropoietic Anaemia type 1 (CDA-1) as a young baby. People with CDA-1 make red blood cells more slowly than normal in the bone marrow and break them down faster than normal in the blood vessels.

Lucas has Pyruvate Kinase Deficiency and this year in honour of Rare Disease Day, he not only raised an incredible £2,000 for our small charity by hosting a 'Star Blood' walk but he also raised awareness of rare diseases.

Between 5 and 7 May while the rest of the country - not to say the world - was focused on the coronation of the new King, a small band of us gathered in a hotel in Leeds for what we believe is probably the world’s first CDA patient conference.

Emma Buysman, CAN supporter and parent of Lucas, who has  Pyruvate Kinase Deficiency was invited to represent CAN at the British Society of Haematology Annual Scientific Meeting, a conference for those from the world of blood specialists and those who provide support.