Interview with Stephen Jones

IPF patient and chair of the charity organisation Action for Pulmonary Fibrosis.

“Debilitating is the best way to describe IPF cough
…it impacted all aspects of my life.”

Can you please introduce yourself and your background?

My name is Steve Jones. I am the Chair of Action for Pulmonary Fibrosis UK, a charity founded in 2013 by patients, family members and doctors specialising in pulmonary fibrosis.

I was diagnosed with IPF in 2008 and lived with the disease for eight years, before receiving a single lung transplant in 2016, at the age of 67. I’m very fortunate to have survived to enjoy my 70th birthday.

I’m also on the Executive Board of the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) and on the Council of the European Lung Foundation (ELF).

 

Tell us about your journey to the diagnosis of IPF

It took around five months to be diagnosed with IPF. I first went to my GP with a persistent cough. He changed my blood pressure medication, which seemed to stop my cough for six months but then it came back. I expected my doctor to change my blood pressure medication again, but he referred me to my local hospital for a chest X-ray, then a CT scan, and lastly a bronchoalveolar lavage, at a specialist centre. When the results came back, I had my diagnosis: IPF.

My journey was straight-forward and I was diagnosed fairly quickly, which isn’t always the case. Results from a 2018 survey by Action for Pulmonary Fibrosis of 776 patients in the UK showed that 35 percent were initially diagnosed incorrectly, while a study by EU-IPFF showed that 37 percent of patients across Europe were misdiagnosed. Misdiagnosis is very common among IPF patients because the disease can be mistaken for other respiratory conditions such as pneumonia and asthma. The average time to diagnosis in the UK is seven months, with some patients unfortunately remaining undiagnosed for over two years. For a disease with a survival prognosis of only 3-4 years from diagnosis, this is serious.

 

You mentioned that one of the initial symptoms of IPF is a cough. What’s the difference between IPF cough and what we know as ‘normal’ coughing?

For many people, IPF cough starts as a tickly, dry and persistent cough. Up to 70 percent of IPF patients experience cough during the disease but not everyone has it from the start. Over time, my cough became productive, with lots of phlegm: sticky phlegm is a particular problem as it’s more difficult to clear than watery phlegm. Coughing becomes very exhausting and impacts other parts of an IPF patient’s life.

Debilitating is the best way to describe IPF cough… it impacted all aspects of my life. At work, I found myself muting calls to allow myself to cough, or avoiding calls altogether. When I worked with clients, I had to pretend that there was nothing wrong, which was isolating. Before IPF, I used to like telling one-liner jokes, but I had to stop because my cough always seemed to get in the way. My family and friends were understanding but I know some patients are embarrassed by their cough and feel they can no longer meet people socially.

How did IPF cough affect your family?

My children were especially worried about me because, to them, a worsening cough was an indication of the developing disease. They were especially concerned when I spoke to them on the phone because I coughed so much. The cough was always there and very unpleasant. It affected my sleep and my family’s as well.

 

Is there an unmet need when it comes to managing IPF cough?

Yes, most definitely. Currently, there is no treatment available for IPF cough.  However, there is some hope now, as we know that there are a few drugs in the pipeline which target IPF cough.

 

What are the best approaches people can use to relieve IPF cough?

I couldn’t find any medicines to relieve my cough. However, I found that riding my electric bike helped. It forced me to breathe more deeply, which loosened the phlegm and made my body feel more efficient. I found a special place on my cycle route where I used to stop for a while and force myself to cough it all up. It felt good for a few hours until the phlegm built up again.

 

What resources are currently available for IPF patients?

Action for Pulmonary Fibrosis, which I chair, currently has a network of around 80 support groups, which we aim to increase to 100 over the next two years. At first, I was reluctant to go to a support group. When I finally decided to attend a support group meeting, I was surprised at how much I enjoyed it. I became a born-again support group enthusiast! The benefits of the support group are that everyone understands what you’re talking about, we support each other, share experiences, and find out about the latest treatments and ways of managing symptoms.

My role as Chair of Action for Pulmonary Fibrosis also includes helping colleagues to organise patient information days, across the UK. We’re also in contact with around 4000 patients, directly and indirectly. We aim to provide a space for those diagnosed with pulmonary fibrosis, where they can connect with others and find support.

This narrative has been developed in collaboration with Action for Pulmonary Fibrosis to which Vicore provided a grant to the charity in order to raise awareness of IPF and support research within this field.

Vicorepharma

On vicorepharma.com, we use so-called cookies to analyze how our website is used in order to optimize and improve it. You choose yourself whether you want to consent to our use of cookies.

Vicorepharma is responsible for placing cookies on the website and for the processing of your personal data collected by them. For more information about our processing of your personal data, see our privacy policy

Cookie policy

Your consent applies to the following domain: vicorepharma.com
The cookie policy was last updated: 2023-06-29

Privacy Policy

Show the cookies used on our website

Necessary cookies is needed in order for the website's basic functions to work correctly and for us to be able to save your choice of cookies.

  • cookies_set

    Purpose: Saves the visitor’s choice of cookies.
    Issued by: mk cookie master
    Lifespan: 1 year

    Domain: vicorepharma.com

  • selected_cookies

    Purpose: Saves the visitor’s choice of cookies.
    Issued by: mk cookie master
    Lifespan: 1 year

    Domain: vicorepharma.com

Statistical cookies helps the website owners to understand how visitors interact with the website by collecting and report this information.

  • _ga

    Purpose: Used to understand how visitors’ navigate around the website.
    Issued by: Google Analytics
    Lifespan: 2 years

    Domain: vicorepharma.com

  • _gat

    Purpose: Used to throttle request rate. If Google Analytics is deployed via Google Tag Manager, this cookie will be named _dc_gtm_.
    Issued by: Google Analytics
    Lifespan: 1 minute

    Domain: vicorepharma.com

  • _gid

    Purpose: Used to understand how visitors’ navigate around the website.
    Issued by: Google Analytics
    Lifespan: 1 day

    Domain: vicorepharma.com

 

What are cookies?

A cookie is a small text file that is placed on your device (computer/mobile/tablet that has access to the internet) by the website you visit – if you give your consent to this. The cookie can, for example, recognize you as a user when you visit our website and make it possible to remember important information that makes your visit more comfortable and provides an improved user experience. Cookies are so-called passive files that cannot spread dangerous software or viruses on your mobile device or computer.

There are two types of cookies, permanent cookies and session cookies. At vicorepharma.com we use both permanent cookies and session cookies. Permanent cookies are saved as a file on the computer for a certain time until the server that placed them, or you as a visitor choose to delete them. Session cookies are temporarily stored when you as a visitor are on the website and disappear when you close your browser.

Cookies can also be divided into first-party cookies and third-party cookies. First-party cookies are placed by the website you are visiting, while third-party cookies are placed by another website. At vicorepharma.com, we use both first-party cookies and third-party cookies.

 

How to avoid cookies

When you visit our website, you can refuse all or certain types of cookies. You can also withdraw or change your consent at any time by clicking here.

You can also block cookies by changing the settings in your browser. Then your browser will automatically refuse cookies or inform you when a website requests to store cookies.

After your visit, you can review and delete the permanent cookies that have been stored in your browser. In the list below, you will see the name of the cookies vicorepharma.com saves so that you can easily identify them.

Here you will find more information about how to manage cookies in your browser:

 

Cookies used by third parties

On vicorepharma.com there may be content that is embedded from YouTube. YouTube places cookies in your browser when you visit youtube.com or when you click on embedded content from YouTube on our website. vicorepharma cannot control these cookies or the personal data and information that may be collected. vicorepharma does not use the targeted marketing services offered by YouTube. As a user, you therefore need to check YouTube’s website for further information on how they manage cookies, what information they collect and how you can delete any third-party cookies.

 

Cookies used on vicorepharma.com

Necessary cookies is needed in order for the website's basic functions to work correctly and for us to be able to save your choice of cookies.

  • cookies_set

    Purpose: Saves the visitor’s choice of cookies.
    Issued by: mk cookie master
    Lifespan: 1 year

    Domain: vicorepharma.com

  • selected_cookies

    Purpose: Saves the visitor’s choice of cookies.
    Issued by: mk cookie master
    Lifespan: 1 year

    Domain: vicorepharma.com

Statistical cookies helps the website owners to understand how visitors interact with the website by collecting and report this information.

  • _ga

    Purpose: Used to understand how visitors’ navigate around the website.
    Issued by: Google Analytics
    Lifespan: 2 years

    Domain: vicorepharma.com

  • _gat

    Purpose: Used to throttle request rate. If Google Analytics is deployed via Google Tag Manager, this cookie will be named _dc_gtm_.
    Issued by: Google Analytics
    Lifespan: 1 minute

    Domain: vicorepharma.com

  • _gid

    Purpose: Used to understand how visitors’ navigate around the website.
    Issued by: Google Analytics
    Lifespan: 1 day

    Domain: vicorepharma.com

General

Vicore Pharma Holding AB (“Vicore”) shall only process personal data in accordance with applicable data protection law and high industry standards.

 

Personal data.

Vicore processes personal data provided to us;
(i) by you in the day-to-day communications, or

(ii) in connection with entering into or performing an agreement or business arrangement with you, or
(iii) by a third party allowed by law or your consent.

The personal data may consist of contact and identification details and other information relevant to the situation.

 

Purpose.

Vicore process personal data for the purpose of communicating with you and to perform, manage and comply with agreements between us as well as rights and obligations which are allowed by law or applicable regulation.

 

Legal grounds.

The legal grounds for processing personal data is either;
(i) your consent which shall be considered provided when you either voluntary submit the personal data or enter into an agreement with us, or
(ii) a legitimate interest allowed under law.

 

Security

Vicore shall use adequate technical and organisational security measures to protect the personal data from loss and to safeguard against access from unauthorised persons.

Transfers of personal data may only occur;
(i) to third parties who perform services on Vicore behalf and who may only process personal data in accordance with our instructions, and may not use personal data for their own purposes; and
(ii) outside the EU/EEA only in accordance with applicable data protection laws and subject to the EU Commission’s standard contractual clauses, and
(iii) as otherwise permitted by law or your consent.

Duration.

The duration we process personal data is limited to what is reasonable for the purpose of the processing, unless otherwise required or permitted by law.

 

Rights

Vicore is the controller of the personal data processing, meaning that we are responsible for that the personal data is processed correctly and in accordance with applicable data protection laws.

Unless prevented by applicable law, regulation or agreement data subjects have the right to;
(i) know what personal data we process about them,
(ii) request that we rectify or erase inaccurate or incomplete personal data
(iii) object to specific processing of personal data, and
(iv) receive the personal data provided by them and have the personal data transferred to another party responsible for data processing.

All communications with Vicore regarding how we process personal data or exercise of any of your rights can be sent by e-mail to info@vicorepharma.com or by post to the address above.

Reports and complaints can also be directed to Datainspektionen who is the supervisory authority for our processing of personal data.