Table 9 Quotes relating to the types of chronic symptoms experienced

Pain

 “The main problem that I experience with the acute attacks, was that I was getting chronic pain in between the acute severe attacks. All day, every day…and I required huge doses of painkillers every single day […] Just to get me out of bed, so that I could get – you know – get dressed and try and live life.” (Patient E)

Psychological depression

 “[I experience] psychological depression I suppose, because it completely and utterly ruins your life, well it ruined my life. Whether I say that in another ten years’ time, I might sort of be back on track, but so far I’m still not back on track to where I was five years ago.” (Patient A)

Difficulty concentrating

 “I just can’t concentrate on any one thing. It’s just really strange. I almost used to be quite, well, reasonably intelligent but I find […] now sometimes it’s difficult to hold a normal conversation because I can’t think of the words I’m trying to say, [the words] just won’t come and definitely sometimes I feel like I’m stupid because I’m saying the wrong words […] the longest I can tend to concentrate on one thing is maybe about an hour.” (Patient F)

Recovery process/neuropathy/paralysis

 “From when the porphyria was [undiagnosed], when I was in hospital and I was paralysed […] I gained sensory-motor neuropathy. I walk with a stick and for long distances I need a wheelchair.” (Patient J)

 “Between attacks there is a sort…of a recovery process. So, firstly there is some kind of nerve damage. Then there is a significantly long recovery period, which can be quite painful for [my wife] and reduce her mobility […] [Then my wife] starts doing more and engaging more with the things she likes to do […] and my care responsibilities would go down to very little.” (Caregiver A)