Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
Tricia Kay was diagnosed with Hypersensitivity Pneumonitis eight and a half years ago, but there was very little literature to read about the condition. She explained how she was fortunate enough to be assigned a lovely lady called Susan who phoned her every Tuesday.
I was able to ‘offload’ my questions and queries, however silly, and she would tell me where to get answers and alleviate my worries. Our weekly chats made areal difference to how I managed and coped with my lung condition. It was for that reason that I decided that I would like to be able to do the same for someone else
“You soon become friends and chat about other things and some of the health-related issues are relieved. I hope that I help my ‘friends’ as much as Susan helped me.”
Philip Williamson found being diagnosed with IPF a bewildering and traumatic experience.
“I had never heard of the condition and, having been very healthy and physically active throughout my life, found the diagnosis difficult to come to terms with, as did my partner, close friends and family.
My consultant mentioned Action for Pulmonary Fibrosis and I visited the website. I found it encouraging and useful and felt a strong desire to support the charity and those living with the condition. The opportunity to volunteer for the Telephone Befriending Service seemed an excellent way of lending my support.
The initiative is a splendid way for people affected by fibrosis to share their stories, to enjoy mutual support and encouragement, and to engage with someone who knows and can empathise with the impact of diagnosis and living with the condition.
“What is particularly rewarding, for both parties, is the chance to enjoy a chat, often in wide-ranging conversations – such as sharing information about our hobbies and interests and much more.”