Myasthenia is classified as a rare disease affecting the neuromuscular junction. But how rare is it? On December 21st 2021, Iain M. Carey and his colleagues published a paper entitled ‘Prevalence and incidence of neuromuscular conditions in the UK between 2000 and 2019: A retrospective study using primary care data’.

This study provided statistical backing for estimations into the number of patients diagnosed with a neuromuscular disease. The paper itself provided prevalence rates for myasthenia gravis (MG), lambert-eaton myasthenic syndrome (LEMS), and congenital myopathies (a term which can be associated with congenital myasthenic syndrome (CMS)).

How this was achieved was by looking at large-scale data sets provided by electronic primary care centres. Around 13 million patients are registered in these data sets each year. Carey et al aimed to estimate trends in the recording of neuromuscular disease in UK primary care between 2000-2019 and were able to pull data from 1745 unique practices.

What was found was by looking at these large-scale data sets, the group were able to provide estimates for the number of people diagnosed with a neuromuscular disease per 100,000 of the population. For MG this was 33.7, for LEMS, the rate was 0.3. Congenital myopathy was identified to present at a rate of 3.1 people per 100,000 – but this includes all myopathies and not just cases of CMS.

Based on a current UK population of around 67,817,100 (Worldometers), this would suggest there are currently 22,855 people living with MG. For LEMS, this number would be 204. And finally for congenital myopathies, this would be 2103.

These numbers are to be considered estimations until a full registry of myasthenia patients is available. Regardless, this work gives insight into the number of people living with what is referred to as a rare disease. Myaware will continue to review this space and new studies as they come out and the accuracy of such estimations improves.

Read more about myasthenia

Let our Research and Partnerships officer Charlotte Campbell know what research you would like to learn more about.