Managing Height in Marfan Syndrome
How Tall is Too Tall?
In our pursuit of ever-greater heights, humans in industrialised nations have grown an average of 4 inches over the last 150 years. But height is always relative and with the propensity of Marfan patients to outgrow the average, many parents approach our helpline on behalf of their children to ask ‘How Tall is Too Tall’? In this article, 6-foot-1-inch-tall Eleanor muses on this very matter.
by Eleanor
“How tall is too tall and should my child be treated medically to manage their growth and potentially excessive height?” I can’t say I’ve ever properly thought about this (because height restriction wasn’t an option back in the 1970s/80s, or at least we never talked about it) but I can say I’m now very pleased to be the height I am – just under 6’1” (1m84). I think if I’d had my height managed and was now “only” 5’10” I might wonder how tall I might have been. 5’10” is considered “short tall” on the international Facebook groups for tall women’s clothing which I belong to on Facebook!!!
I must add that I live in the Netherlands, where the average height of both men and women is quite a bit taller than in the UK. I can think of at least ten women I know who are my height. When I’m back in the UK, I do feel taller than here in the Netherlands… but the new generation are getting taller and taller and so there will come a time when I’m no longer considered “tall” at all!
There are many advantages to being tall (if you ignore what it’s like being a teenager and also what it’s like trying to find clothes to fit!) and I certainly wouldn’t want to have had my growth ‘managed’ and been made average height. Nothing wrong at all with being average, but a bit of height can definitely work to your advantage and if you’re used to that….
Sorry for the rather incoherent thought-dump but it’s a very difficult question to answer! I would never want to brand anyone as “too tall”, I think I would want to stress that first of all. You learn to live with the body you’re dealt with, whether that’s short, tall, thin or chubby (though you might get a different answer from someone who is a lot taller than me): personally I’m glad I’m the height I am. At my height you can see eye-to-eye with all the high-level managers at work (who are often tall themselves), you don’t get ignored, you don’t have to ask for help to reach stuff in the supermarket, you’re tall enough to be a model…. People make (mostly ridiculous) comments to tall people about how tall they are purely because they’re actually slightly jealous (you’d never make a similar comment about someone’s weight, for example), at least that is how I’ve come to explain it.
OK, I’ll stop rambling… in summary:
· No-one is “too tall”.
· Life is a bit more difficult in different ways if you’re very tall but you learn to deal with it whatever height you end up at.
· Being tall brings its advantages and people are very often subconsciously a bit jealous of taller people.
· I’m very happy at my height, though as a teenager I wasn’t, and you do have to learn to embrace it.
