Living with lung disease: Georgina's story

September is Pulmonary Fibrosis Awareness Month. Pulmonary fibrosis (PF) is also known as interstitial lung disease (ILD) and is the most common form of lung involvement in SSc. This can occur at any time, although early detection often leads to much better outcomes. This is Georgina’s story of living with lung disease, which has a dramatic impact upon her life.

Georgina’s story

Georgina Pantano is 36 and lives in Milton Keynes with her family. She was diagnosed with SSc and interstitial lung disease (ILD) during 2012 aged just 27, after experiencing symptoms for over a year. Georgina’s diagnosis came about suddenly during what was supposed to be a short family visit to Poland, however she commenced treatment within a week and ended up staying for almost a year before she could finally return home. We asked Georgina about her experiences of living with ILD and the effect that it has upon her life.

"My diagnoses of SSc and ILD have impacted on my life a huge amount – it has changed my life and I have had to learn to adapt. Living with ILD makes everyday life more difficult. It puts a strain on everything, especially when you need to have help from someone else. 

I can’t walk long distances anymore, and I can’t do things spontaneously as I did before. If I know that I am going to have a long day then I have to plan ahead, and my mum would need to be there to help me. I don’t get a cough, but I do get out of breath and I get tired very easily, even from just climbing the stairs. 

I’ve had to adapt my daily life, taking care to plan in advance and not overdo things. I also have to include rest days in order to take part in social events. I now have to use certain mobility aids to help me with some of my daily activities. For example, I use a wheelchair on long days out. I also have a walking stick for some extra support on bad days. Even having a shower affects my breathing, and it affects so many of the little things that I used to take for granted. We have also had to rearrange the house and I now have a chair on the landing because I am out of breath and lightheaded when I climb the stairs, so I have to sit down.

It has almost taken my independence away. Before my diagnosis I was always constantly on the go, but now I have had to adjust to having help.

I have had COVID and this has also affected my lungs, so simple things like applying makeup and getting ready to leave the house are all even more difficult now; they were tiring before but now it is even worse.  I find cooking very tiring, and many household tasks are now impossible.

This disease has stolen decades of my life. It has changed everything."

What is interstitial lung disease?

Interstitial lung disease (ILD) in SSc means that the walls of the small air sacs (alveoli) that make up the lungs become thickened by a mixture of inflammation and fibrosis, or scarring, which then prevents the lungs from working effectively. Because of the presence of scarring, this condition is also known as pulmonary fibrosis.

Early detection is crucial, because if lung disease is diagnosed and treated early, the outlook is often much better. Always remain vigilant for any changes, and report any new symptoms to your doctor as soon as you can. Regular testing remains vital to detect the early signs, so it is important not to miss routine appointments, even if you feel that nothing has changed.

Breathlessness is the most common sign of ILD, which may be more noticeable on exertion or when climbing stairs or walking uphill. You may also notice a persistent cough and decreased tolerance to exercise. However, if lung involvement is quite limited, there may be no obvious symptoms at all. Other possible signs include:

  • A persistent cough
  • Tiredness or fatigue
  • Difficulty in breathing deeply
  • Tightness within the chest
  • Lightheadedness
  • A racing heartbeat or palpitations
  • Chest pain

Did you know...

  • Up to half of people living with SSc may develop lung involvement at some time.
  • Terms such as ‘pulmonary fibrosis,’ interstitial lung disease,’ ‘lung fibrosis,’ and ‘lung scarring’ can all be used to refer to this type of lung involvement in SSc.
  • You may not be aware of any symptoms at all, especially in the early days.
  • ILD will often remain stable without having a major impact on daily life, especially if it is detected early on.
  • People living with SSc often lose weight, and one reason for this could be that you are using more energy because of breathing difficulties.
  • A number of effective treatments are available to help to stabilise ILD and slow its progression.

We have recently produced a new booklet: Understanding Lung Involvement in Systemic Sclerosis

For your free download, please click here

If you would like to talk to one of our volunteers about any aspect of living with Scleroderma or Raynaud's, our Helpline is available every day on 0800 311 2756. For more information on all aspects of lung involvement, please visit