One thing that bothers me is that I’m often too self-centred. It’s all too easy to be obsessed with one’s own problems and to forget the impact the disease is having on loved ones. My journey is difficult, but so is the journey my wife and children are having to travel. Over time, with increasing breathlessness, I’ve become less able to do things for myself. At the same time my wife, who was my companion and lover, has had to become my carer. As I’ve become more and more dependent on her, she has also lost her independence. And, as I worry about the future, so does she.
Currently there are two antifibrotic medicines, which have been shown to slow the rate of fibrosis for many patients. I take one of these. But more effective drugs are needed to stop this devastating disease in its tracks. These new medicines won’t come in time to help me, but I hope they will benefit future generations.
In future, with a better understanding of genetics and of the basic processes involved in fibrosis, more effective and personalized care tailored to the needs of individual patients, will hopefully be possible.
Patient story kindly provided by Action for Fibrosis through a grant from Vicore Pharma; patient details have been removed to respect confidentiality.
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