Kennedy’s disease: Doctors took over 20 years to diagnose navy captain’s ‘nasty’ illness

“I can’t walk far these days, and when I do I use two walking sticks and I can be in meetings and my speech comes to a grinding halt.

“Another significant feature of Kennedy’s is fatigue so by the end of the day it really fatigues me – even just preparing a meal is too difficult.”

Unlike motor neurone disease, however, it is possible to definitively diagnose Kennedy’s disease with a blood test.

“I think it is often missed or misdiagnosed because of lack of awareness, that’s why it’s extremely important awareness is raised,” Kim explained.