The mention of Marfan syndrome summons a familiar image: tall, slender, long-fingered, narrow-faced. But syndromes, like lives, rarely fit neat outlines. While children with Marfan syndrome are, on average, taller than 95% of their peers by the age of three, not everyone with Marfan is tall or thin, nor do they all wear its classic features.
Flanked by members of the medical profession, Derek is subtly educating clinicians about Marfan syndrome. At the recent PACES Ahead doctors’ mock exams, he was assessed by 150 doctors-in-training and, after some prompting (and a glimpse of his INR booklet), between 40 and 50% correctly identified his condition. Derek said "things are definitely travelling in the right direction".
Standing at 5 foot 7, Derek surprised many of the medics, who had expected someone with Marfan syndrome to be much taller. This proved fortuitous, reinforcing an important point - height is relative, and not everybody with Marfan syndrome is unusually tall compared with the general population.
Meanwhile, once Derek’s diagnosis had been confirmed, many of the medics asked him to demonstrate some of his hypermobile hand party tricks. He also noticed that far fewer doctors were familiar with Loeys-Dietz syndrome.
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