Dr Child's Casebook: What’s in a Name?
A condition with many faces, Marfan syndrome means different things to different patients. Yet to outsiders, mention of Marfan syndrome can apply one sweeping stigmatising label. From mortgage insurers to risk assessors, many have their own (mis)perception of the syndrome and its manifestations. Conscious of this, a lecturer faced with the looming prospect of a risk assessment and a return to the classroom contacted Dr Anne Child for advice on whether she should declare ...
Q: I'm a lecturer and i need to complete a risk assessment form in order to return to the classroom. I'm not keen to put my condition down...and so far there isn't much evidence that we are adversely affected...so should I or shouldn't I? Thank you!
A: The answer is simple. Just put down exactly what you have, but not the name of the condition, which is all-encompassing. So, if you have dislocated lenses, put that. If you have a slightly leaky heart valve, put that. If you have painful joints, put that. If you need to ask for special aids, eg special chair just put for backache. This is truthful but does not jeopardise your future.
Generally, the label Marfan Syndrome means a potentially serious condition involving the heart, whereas you know that there is a wide spectrum of symptoms, and even in the same family, different systems can be involved. Each Marfan person is unique. It is a condition, which develops slowly over time. Just write about the symptoms you have at that point in time.