Article: Patient support groups are a lifeline for those with idiopathic pulmonary fibrosis

February 2020
One of APF’s key aims is to raise awareness of pulmonary fibrosis with the medical profession, particuarly GPs. Our trustee Howard Almond, did just that recently in The Lancet, one of the world's most respected medical journals.

This is an edited version of the full article.

“I lived in Austria for a long time but moved back to the UK in 2003 to become my mum’s main carer, who had dementia. One day I walked the steep climb to Tintagel Castle in Cornwall and could hardly breathe. I thought I just needed to exercise more, but then developed a persistent cough. My GP heard crackles in my chest and referred me to a respiratory consultant. After a CT scan I was told that I could have idiopathic pulmonary fibrosis (IPF) which I had never heard of.

A lung biopsy confirmed the diagnosis.

One of the best things I did was start ‘singing for breathing’ classes. In just a couple of months, my forced vital capacity reading went from 70% to 95%!

It is truly amazing how learning to breathe properly can help. My lung capacity decreased to 80% while my singing coach was away which shows how much of an impact it had. I have also learned how to recover from breathlessness when out walking.

“My involvement with APF came after I attended an information day and met trustees who spoke about research, support groups, and the lobbying they were doing on behalf of patients. I expressed an interest in helping and was invited to join the board of trustees. There are now over 75 support groups in the UK—something I am immensely proud of.

Attending a support group was one of the best decisions I’ve made, meeting others in the same position all with different methods of coping

I run a small group in Plymouth, and I am about to set up another in Torbay.

“Early in 2019 I had a bit of a crisis. I couldn’t walk far and was getting very out of breath doing the simplest of tasks. I was convinced the IPF was progressing rapidly. I was eventually diagnosed with a pulmonary embolism and it took me three months to feel better again. My advice is don’t assume that a deterioration in your condition is just progression of the disease.

Now I am careful not to overstretch myself. I plan ahead and keep my heart rate and exercise at a suitable level

I do remember my time walking without restrictions in the mountains in Austria: how I would love to be able to do that now!

“Essentially, it all comes down to pacing yourself and not expecting miracles. I am constantly aware of the illness—aware of every breath I take. But while my health might have deteriorated I am still able to live a normal life.”

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Read the article on The Lancet website