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Table 6 Quotes relating to management of acute attacks

From: Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

Quote (identifier)

“Once I start vomiting, I would go to the hospital, because […] if I couldn’t get any food into me, it was a bit of a lost cause and I would have to get treatment straight away.” (Patient E)

“[…] I try and take the paracetamol in the house and that doesn’t work. I do everything I can but when it gets so bad it quickly happens […] within 30 minutes I can be [in] non-stop pain dialling for an ambulance.” (Patient B)

“The pain was excruciating, the pain killers, intramuscular morphine […] that didn’t touch it!” (Patient G)

“I know that no common painkillers will take [the pain] away […]” (Patient J)