ANYONE looking at me would think that I am like any other fit and healthy young man.

However, while most people enjoyed their teens, I spent most of mine barely able to walk.

I had a painful operation to break and repair my breastbone at 14, a double hip replacement before I was 20 and I’ve had open heart surgery at 31.

It may be hard to believe, but these are the effects of the life-threatening condition I live with.

I was 14 when I discovered I had Marfan syndrome which affects the body’s connective tissue.

When I was first diagnosed none of my family had heard of the condition and mine was the only case at my family doctor’s surgery.

At the time it was considered a rare condition, but now it is believed that one in 3,300 people have it.

But the risk of sudden death lurks for many people who have no idea they have it and those whose diagnosis has come too late.

I was like any other normal kid, but I remember going for a cross country run and suffering with stiff sore hips.

The pain didn’t go away. Weeks later, medics couldn’t understand why I was unable to lie flat with either bending my knees or arching my back.

It seemed odd that a thin, young, teenager with spindly arms, long fingers and toes, flat feet and a protruding chest was unable to lie flat.

Daily Echo:

It was only when a junior doctor walked past the hospital cubicle and saw me that a diagnosis was made – it was Marfan syndrome.

The gene that makes the protein fibrilin, and gives skin and connective tissue its stretchy feel, is faulty.

That means it can affect the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs.

The condition can weaken the aorta artery that supplies blood from the heart to the rest of the body which can be deadly.

For those undiagnosed and untreated, the average age of death is 42.

I’ve heard one story where a 27-year-old doctor collapsed at the London hospital where she worked and was dead before she hit the floor.

There is also a risk of permanent blindness to some sufferers because of dislocated retinas, which can be caused by anything from a knock in a game of rugby to waking up in the morning.

But it would be a mistake to see Marfan’s as simply the sum of medical parts. It affects looks as well as health.

Many patients also suffer from a curved spine meaning they can’t sit upright, or they have a breastbone that either sticks out or sinks into the chest.

Some sufferers find their toes curl under their feet, preventing them from walking.

The main outward features of the condition mean people with Marfan syndrome are tall, with long, spindly arms, long legs and long fingers and toes.

With a wingspan greater than height, the syndrome does have its unexpected benefits.

I remember my piano teacher making a passing comment that I’d be really good at playing Rachmaninoff!

It also means student doctors take a keen interest in your condition.

I underwent annual check-ups on my heart to make sure there wasn’t an aneurysm, a painful operation to break my protruding sternum and fuse it again which meant I had to endure five days in a hospital bed with a sandbag on my chest and two hip replacements before I was 19.

Healthwise though, between 19 and 31, everything ticked over just fine, but I knew the big one was just around the corner.

As the years went by I knew they would have to operate on my heart to prevent catastrophe.

Last year, to stop the aneurysm, I was under the knife for six hours when surgeons placed knitted plastic around the aorta where it meets the heart to strengthen it while trying not to damage the heart valves nearby.

But without the operation I would be facing bigger problems.

Of course, I worry for the future. I’ve seen elderly people with Marfan syndrome with severe mobility problems and that frightens me.

I also wonder how long the hip replacements will last.

But I have to trust what the doctors say.

Despite the pain and complications I have endured since the operation, I have thought of those who have been less than lucky and haven’t been diagnosed.

And of those whose diagnosis has come too late.

FACTFILE:

Marfan Syndrome can affect both men and women of any ethnic background;

Average life expectancy for those diagnosed at an early age is ordinary;

Average life expectancy for those who are not is 42; 

Common symptoms: elongated limbs out of proportion with the rest of the body; long fingers and toes; long narrow face and skull leading to jaw problems; stretchy skin; a breastbone which is profoundly either sunken into the chest or protrudes out of it; mobility problems,which can deteriorate over time; curved spine; vision problems including blindness; and heart defects. 

Famous people believed to have it: US President Abraham Lincoln, Egyptian pharoah Tutankhamen and British composer John Tavener

Tests can be done to check whether you suffer from the condition. For further information and advice see your GP.

For more information visit: www.marfanassociation.org.uk; www.marfantrust.org; and www.marfan.org.