Patient with mild IPF

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Video transcript

Living with IPF

What were the first signs that there was a problem?

The first sign was breathlessness under pressure. I played sport and jogged regularly for years. The first sign was a very fast and clear decrease in my abilities, over a period of around 6 months. I used to live in a third floor apartment with no lift, which I could reach without any problem before the diagnosis, but 6 months later I could no longer climb a flight of stairs. I got married in July of the year I was diagnosed, so I delayed having this breathlessness checked. I did not want to spoil the party or the wedding for me or my husband. So I waited until September when I also discovered that my nails were curving and this had clearly increased. In fact, there, they are a bit shorter, but if I put it on the table it would touch the table. So my nails were really claw-like. I did a Google search to see what might be causing the curving of my nails. I thought it was a sign of ageing or a deficiency or something, I certainly didn't think of that. I discovered it could be symptomatic of pulmonary fibrosis. That led me to quickly visit a doctor and to have some X-rays and it was confirmed.

 

How has IPF affected your relationships?

No, it has not changed my relationships with my close relatives and friends. To begin with, I told my family through my mother at the last minute - just before having the biopsy. I didn't want to make people panic before getting a definite diagnosis. There hasn't been much curiosity about it. I live quite far from my family, and I didn't go into it much to avoid them worrying. My friends were a lot more curious than my family and asked after me regularly. Of course nobody had heard of the illness, including me. So fundamentally that didn't change the relationships either. My husband supports me 200% and he read up a lot about the illness when he learnt what I had. He even asked the opinion of one of the colleagues of my doctor at the time. Me, I try to learn as little as possible about the illness. I prefer to trust in the future and the new perspective we will have on it, compared with the one we have today.

 

How do you remain positive?

I am fairly positive for the time being. I think that compared to some people, I'm not suffering too badly. Nine months have passed since the first diagnosis and my condition has not worsened in my case, except for a bit of cough.