GEORGE Bush is not the first American president to be attacked for imprisoning without trial. Similar accusations were once made against President Abraham Lincoln, but having freed the slaves and then being assassinated, he became a folk hero.

Now he is thought to represent everything honest, direct, decent and straight in politics. Although his office was dominated by anti-slavery legislation and the American Civil War, there are other reasons why doctors have cause to remember him. Lincoln suffered from Marfan syndrome.

Lincoln was lucky to reach the age of 56, for without treatment the average age of death for people with Marfan syndrome is 32. If, therefore, this inherited disease had followed its usual pattern, the slaves might have kept their chains and his opponents might never have been imprisoned.

He would never have achieved his legendary status — pensive, patriarchal and authoritarian — and Margaret Mitchell’s Gone with the Wind might never have been written.

A clue to Lincoln’s medical troubles are the pebble-thick spectacles through which he peered at the world. Marfan syndrome has one or more of three principal components. There are eye troubles from extreme short sightedness, retinal detachment, glaucoma and dislocation of the lens.

Then there is the physique which is characterised by great height, a stooping back (scoliosis), pigeon or cobbler’s chest, and excessively long, double jointed limbs and fingers in proportion to the person’s height. Finally, and this is what usually kills the patient early, aneurysms of the aorta and congenital problems of the heart’s valve.

The basic cause of Marfan syndrome is a congenital abnormality of the patient’s elastic tissue. Only a tiny thread of fibrillin, a protein, is missing. Indeed, the fibrillin thread is so small that if it was magnified six thousand times it would still only be the width of a hair. Even so, its effect on the elasticity of the tissues of the eye, heart, joints and skin can be devastating.

The weakened tissue undermines elastic tissue around the lens of the eye that becomes unstable, the joints are hyper-mobile (double-jointed), the aorta — the great blood vessel leading from the heart — is so floppy that it balloons out into an aneurysm liable to burst and the valves of the heart billow backwards. The excessive growth, the long arms and thin aesthetic fingers are the result of abnormalities in the quantity of the growth hormone.

Lincoln, Nicolò Paganini and Sergei Rachmaninov are not the only people to have had the long aesthetic fingers of Marfan syndrome, so useful for stretching over a keyboard. Sir John Tavener is celebrating his 60th birthday by presenting the world premiere of his latest work, a piano concerto Pratrirupa, at the Barbican Concert Hall tonight.

Sir John also has Marfan syndrome, as did his father and his brother. The Tavener family are unlucky as Marfan is inherited as a dominant gene, but as with playing heads and tails with a coin, there is no more than a 50/50 chance of each child of developing the condition.

Aneurysm of the aorta is not quite as dangerous now as it was. Modern open-heart surgery can remove the affected area of the aorta and replace it. Sir John’s ballooning aorta was dealt with by Sir Magdi Yacoub, a patron of the Marfan’s Trust.

Without surgery, Sir John wouldn’t now be celebrating his first 60 years with a performance by the English Chamber Orchestra, polyphony and guests. Nor would millions worldwide have listened to his composition as the Princess of Wales was carried from Westminster Abbey after her funeral.

The Marfan Trust has been active in research which has discovered that the gene that causes the trouble with the protein fibrillin is located on chromosome 15. It has contributed to the international gene map, has been investigating the pattern of gene mutations in UK patients and has also been studying the risks that pregnant women with Marfan syndrome may experience during their pregnancy and labour.

The trust has information and an education programme that is leading to earlier and more accurate diagnosis and more effective treatment. Genetic counselling is available, and in some cases IVF treatment may be appropriate.

Marfan in the 21st century has a very different prognosis from the one it had at the time of Lincoln’s birth to illiterate parents in a log cabin at the start of the nineteenth century.

It is not only a trial to the 10,000 people already affected in the United Kingdom, but a potential hazard to the future generations who could be born with it.

• Marfan’s Trust, Department of Cardiological Sciences, St. George’s Hospital Medical School, Cranmer Terrace, London SW17 ORE; 020-8725 1189; e-mail on hydatid@sghms.ac.uk

  www.marfantrust.org