Approximately one in 17 people will be affected by a rare disease during their lifetime – that’s about 3.5 million individuals in the UK.1 This means that you will encounter patients with rare diseases during your nursing career. Are you prepared for the idiosyncrasies of caring for this population?
What is a rare disease?
In the UK, the European Union classifies a disease as rare if it affects less than 5 out of 10,000 people in a general population. There are currently between 6,000 to 8,000 known rare diseases in the world, but given the rate at which modern medicine is progressing, about five new rare diseases are described in medical journals every week.2
Around 80% of rare diseases are at least partially genetic and tend to be chronic and even life-threatening. There are often limited, if any, treatment options available for people with a rare disease, making quality of life and symptom reduction a key focus of care.
How can you effectively help these patients, especially if you have never even heard of their condition?
Giving patients time and empathy
The first step in caring for someone with a rare condition is to provide a comfortable interaction between yourself and the patient. This is something you will do with all your patients, but there are some special points to consider when a rare condition is involved.