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I have chosen to run the London Marathon in support of the PCD Family Support Group in order to raise money to help those families that are, and will be, affected by Pulmonary Ciliary Dyskinesia. The PCD Family Support Group does incredible work across the country promoting awareness of PCD, which is a very rare condition affecting only a small number of people globally each year.
Primary Ciliary Dyskinesia (PCD) is an inherited, rare condition associated with the abnormality of cilia. PCD affects the lungs, nose, sinuses, ears and fertility.
The condition involves recurrent infections in the nose, ears, sinuses and lungs. If left untreated it leads to a form of lung damage known as a ‘bronchiectasis’, which is irreversible and can be life threatening. As there is little research and funding for this condition unfortunately, many people are not diagnosed until late childhood, early adulthood meaning bronchiectasis is often the case for many. Daily chest pysio and nebulised saline treatment help to clear the lungs and it is a vital part of the management of the disease. There is no cure and it is a lifelong, progressive condition. Awareness and funding for this condition is important in order to help provide support to families and for necessary research to hopefully one day find a cure.