RARE DISEASE: THE IMPACT OF COVID-19

Written by Dr Elizabeth Johnston-Young

A rare disease is any disease that affects a small percentage of the population.

Living with or getting diagnosed with a rare disease is hard enough without all the difficulties that Covid-19 has brought.

Globally between 3.5% – 5.9% of the world population is affected with a rare disease. This is over 300 million people worldwide living with 6,000 rare diseases. Seventy percent of people were diagnosed in childhood. With 72% of the diseases genetic. Rare diseases are often chronic, progressive and life threatening. People living with these conditions face many challenges, find life very difficult.

The average patient with a rare disease consult with 5 doctors. 2 in 3 patients and carers find it extremely difficult to hold down a job. All those affected from rare conditions get great help, both emotionally and physically from patient groups. Likeminded and bodied people that attend feel the benefit from those who understand their rare disease.

Covid-19 has had a huge impact on the co-ordination of health social care. The pandemic has compounded existing inadequacies. Unfortunately, in the UK there was a suspension in hospital/doctor/social care services – this resulted in disease progression.

Living with a rare disease can be isolating, scary and even though we get our healthcare free from the NHS, it can hit our wallet and find…