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."