learning to live with pulmonary fibrosis
When i was diagnosed with idiopathic pulmonary fibrosis in 2006 i was told very little aboutbthe illness apart from the fact that all the treatments were toxic so they wouldn't treat me with them. i used google and found lots of negative news. 3 years later i met patients with the illness for the first time and started to realise how little i knew about the illness that i would eventually die from. Then in 2010 i discovered that NICE needed patients to help them write a guideline for diagnosis and treatment. over the next 3 years i learnt a lot more, and in 2012 a group of patients and carers finally completed the formalities and launched the pulmonary fibrosis trust, the first uk charity for pulmonary fibrosis. through this charity i have been able to help many patients come to terms with their diagnosis and the variety of treatments. i have also help the british lung foundation as a member of the ipf advisory panel, and i am a member of the nhs-england clinical reference group for specialist respiratory.
Helping others is really rewarding and helps me to realise how lucky i have been to have been able to learn so much about the illness and to have shared this information with so many others.
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