Of course we had no idea about any of this until the day he was diagnosed and actually after a lot of digging and research. Dad had always been super fit, sporty and the bearer of many a trophy for nearly every sport imaginable, rugby being his favourite. How quickly he suddenly became ill and how it impacted his life was shocking to see. His initial diagnosis was in 2015, just 10 days after my baby girl was born. He didn’t live to see her 2nd birthday.
He was actually diagnosed pretty quickly in the grand scheme of rare diseases. His medical team first thought it may have been a chest infection, then pneumonia and then Legionnaires' disease, but they soon arrived, correctly, at mesothelioma. We knew early on it was terminal, but he battled as hard as he could and was prepared to try any drug or trial available. Dad took part in one clinical trial and underwent a pleurectomy/decortication surgery – an aggressive treatment option for pleural mesothelioma, which involves removing the pleural lung lining and all visible tumour masses, while leaving the lungs in place. This bought him some time – a further 20 months, to be precise.
Mesothelioma cases are set to rise in the next 10-20 years and raising awareness of the dangers of asbestos exposure but, most importantly, the work that is still needed to tackle rare diseases like mesothelioma, is as important as ever before. Dad and I supported the Royal British Legion fight for compensation for veterans diagnosed with meso and I took this and Dad’s story to the then Prime Minister Theresa May and was fortunate to meet her to discuss this dreadful disease. But the work continues and public support and increased awareness are paramount to the fight against rare diseases.
OPEN Health is a company committed to helping our clients really make a difference to people affected by rare diseases and their families, and I am so proud and grateful that I can use my job to really try and make a difference. If you would like to talk to us about rare diseases, please do get in touch – we would love to hear from you.