In general there are no activities that patients should avoid, but clearly a sensible approach is needed when choosing a holiday. For patients with severe weakness and fatigue a hiking trip to the Himalayas is probably not a good idea. Having said that, we always encourage patients to stay as active as possible and are often amazed by what people can achieve. Although there are no specific problems with flying patients should avoid becoming dehydrated and carefully consider their diabetes management on long- haul flights. Patients with mitochondrial disease need the same vaccinations as any other traveller and some of these can produce a mild fever or ‘flu-like symptoms, which may be important to consider in children with Leigh disease. In this situation it would be best to ask your specialist regarding vaccination. Similarly, some drugs used to prevent malaria may have undesirable side-effects particularly in children with epilepsy. Again, it would be best to discuss this with your specialist in clinic.
One sensible precaution in case you do become ill whilst abroad is to carry a simple summary sheet with your diagnosis, which medications you take and contact details for your GP and specialist on it. We can provide you with this information in the clinic.
Patients also need to inform their travel insurance company of their diagnosis. Normally this will have no effect on the premium or the cover offered, but in some cases the company will contact your specialist for more information about the condition.