Scott takes 250 cancer tablets a week but it’s not cancer. His diffuse cutaneous systemic sclerosis has caused significant fibrosis of his lungs.
The main issue is the fibrosis of my lungs – it is pretty severe and is worsening. I struggle to breathe and am on oxygen all day. I will use portable oxygen canisters if I am on the move and have a compressor in the house
It all began when the results of a blood test indicated an SCL-70 marker had been found. My GP advised me not to Google it. I was referred to a rheumatologist who then told me I had scleroderma. The x-ray didn’t show that my lungs were affected, however I soon started to have breathing problems and it then became apparent that it was systemic sclerosis and that I needed urgent treatment. I was very lucky to get my treatment and diagnosis as quickly as I did. If it wasn’t so rapid from the onset it may have been a different story.
I have had to make significant adaptations to make sure I can live as comfortably as possible. To open the curtains, I use a long reach bar, for picking up things around the house I have various gadgets. I sleep on the settee – so I can regulate my body temperature as I get too hot sharing a bed with my wife. I have little foam tubes on my shaver to grip it; my cutlery is wider with bigger handles which I use when my hands are tight.
If we go food shopping my wife has to carry an extra container as there is not enough oxygen to finish the circuit. As soon as I come off the oxygen I struggle to breathe and can feel my heart rate go up. It does scare me. But I still function okay – I just keep moving.