Employment

Patients with mitochondrial disease have the same employment rights as any other employee although it is likely that their employer will be less familiar with the particular problems encountered in this illness. Clearly individual circumstances differ, but your specialist should be able to advise your employer on your ‘fitness to work’. It may be that in response to illness your employer offers you an alternative job. Again, it may be advisable to discuss the suitability of such employment with your mitochondrial disease specialist and also with disability employment advisers (DEAs). You can find out more about DEAs via your local job centre. Alternatively your health may prevent you from doing any suitable job with your employer. In that situation they should be able to advise you with regard to the level of private health insurance or critical illness cover they provide.

Choosing a career is very much up to the individual, but our general advice would be that heavy physical work in hot conditions should be avoided. Many patients with mitochondrial disease are likely to experience weakness as their disease progresses and this could severely limit their ability to perform heavy physical jobs. Dehydration and over-exertion can also exacerbate the lactic acidosis present in some patients. Light physical work is however possible for many mitochondrial patients. Other considerations include whether the job involves driving (see Driving) or requires physical adaptations to the workplace in order for you to perform it (e.g. MINICOM, seating, keyboard). Another website that may be able to provide advice or information relevant to your particular employment circumstances is the Disability Rights Commission.