Table 8.

Changes that would improve quality of life

‘Understanding of my condition by doctors, by teachers and parents to educate children with sensibility about these kind of problems. Creating work laws that protect us versus unfair and illegal bullying at work. Tests more accessible and cheap. Creating more laws to recognize our illness as a disability.’

‘I think that classifying TMAU as a disability, and increasing its awareness to primary care doctors, health professionals and pastoral staff would help massively. It would be very helpful if I could leave work/school if I am having a flare up and make up the time at a later date. I think mental health support / counselling should be mandatory for people with TMAU.’

‘Having a medical report to be able to share with work or mention to friends so that people can believe I do have a genuine medical condition and not a hygiene issue.’

‘Yes, more understanding of the condition and how it affects patients, not just physically but the mental impact it has.’

‘A cure or a little hope that makes me have the life of a human being because this is like being buried alive.’

‘I would just like understanding and acceptance that I’m doing what I can to control a very difficult and poorly understood medical condition.’

‘If it was made a recognised disability and anyone who negatively commented were pulled up on it. If it was the same as racism or making comments at a person in a wheelchair.’

‘I am not sure if colleagues knowing about my condition would make things better. I have terrible shame about my symptoms.’

‘What I really want is to be able to work from home and shorter working hours at work.’

‘Support in the right food to eat. To have a group you can share with that understands the pain. For people to understand how this destroys you.’

‘Overall my life in general would become normal if able to manage or control this condition.’

‘A cure, better understanding by others, TMAU should be classed as a disability as it affects you in all aspects of your life, although it’s not visual.’

‘I feel if this was recognised as an invisible disease, more people would be more understanding and perhaps empathetic towards me and know that just because I smell bad isn’t because I don’t wash myself or I’m dirty but it’s because I have a disorder which causes me to smell bad.’

‘Nothing, only a cure for it could make this living hell any better. I just want to live a normal life.’

‘Being able to work from home, and so not have to interact with others.’

‘Possibly more comprehensive information on NHS websites and other health related websites could lead to a more widespread awareness of Trimethyalminuria and could facilitate understanding the causes and treatment - which might result in employers or colleagues developing a more sympathetic approach. If this were an option for everyone else diagnosed with Trimethylaminuria, as a recognised disability, then this could make life easier for other sufferers.’

‘But definitely there needs to be an understanding of the condition by medical people, employers, government, education system, welfare/benefits system and the general population.’