Campaigners are keeping their fingers crossed that ongoing clinical trials at the Royal Brompton Hospital in London herald a significant breakthrough in the treatment of people with Marfan Syndrome.

Diane Rust, who lives in Fleet and is chairman of the Marfan Association UK, expressed a mixture of excitement and caution when she spoke to the News about the Exostent Procedure that the patients had undergone at the top London hospital.

She said: “I must stress that these are just clinical trials — and there have been 12 so far — but all the signs are good.
The patients are all fit and recovering extremely well, and we’re excited about that.”

The condition is caused by an abnormal gene failing to control fibrillin production. It can affect the eyes, lungs and heart.

Sufferers commonly have longer limbs and can be excessively tall. Symptoms can range all the way from very mild to fatal.

The 12 patients underwent an MRI scan and then an operation to insert a “tailored jacket” to contain the aneurysm.

Mrs Rust said: “These are very early days. We still won’t know all we need to know for ten, 20 or 30 years, but what this will allow is for patients to have much quicker operations — two hours instead of seven or eight.

"It is exciting, but it is new. As always, only certain people will be eligible for this procedure.”

Awareness

Mrs Rust has spent more than a quarter of a century spreading the word about Marfan Syndrome, gathering information, lobbying the medical industry and supporting families, just like hers, who have had to cope with the effects of the illness.

When her son Simon was born in 1968 he was treated for a variety of health problems in a number of hospitals.

At first the various symptoms were not linked by the experts, but Mrs Rust became convinced that they were and she set about gathering evidence of her own.

It was 1981 when it was finally confirmed that Simon had Marfan Syndrome and Mrs Rust devoted herself to campaigning for knowledge to fight an illness that affects approximately one in 5,000 and is hereditary in 75% of cases.

She began campaigning from her home in Greenways, Fleet, and finally set up the Marfan Association as a regis-tered charity three years later.

The hereditary factor means that a Marfan parent has a 50-50 chance of passing on the gene to their children.

This has proved to be the case for Simon. He and wife Lisa have two children. Mark, eight, does not have Marfan Syndrome, but their daughter Amelia, three, does.

Full life

Simon, however, is living proof of how well people can cope.

Mrs Rust said: “Simon does really well. He still lives in Fleet and enjoys an active, full life and has a great job.”

Mrs Rust is equally optimistic about her granddaughter.

“Amelia is a lovely little girl and we all adore her. She’s lively, bubbly, happy and active,” she said.

Mrs Rust’s energy and commitment down the years have been rewarded. The single-person charity she started all those years ago has blossomed into a major organisation that has helped to effect real change in the knowledge about the illness and its treatment.

Here in 2008, the association now boasts a Marfan Support Network system across the UK, plus a medical and research advisory team.

It holds a national Marfan information day, regional meetings and training seminars, produces a six-monthly magazine, In Touch, and has its own youth wing.

Mrs Rust now finds herself chairman of an association of which 1,600 families are members.

“I ran it from my home for the first few years,” said Mrs Rust. “But we needed more space so I managed to find some humble little offices in North Camp where we stayed for eight years.

"Now we are back in Fleet at our present offices in Rochester Grove.”

Plenty still needs to be done, of course, and Mrs Rust is still rolling up her sleeves for the fight. The campaign is co-ordinated through her Marfan Association UK website with a battle cry in the spirit of Barack Obama — “Together We Can!”

Mrs Rust was delighted to reveal that Fleet resident Tony Fogarty has raised £620 for the Marfan Association from his valiant effort in this year’s Fleet Half Marathon.

“It’s absolutely superb,” said Mrs Rust. “We’d like to thank Tony, not only for raising the money for us but also for raising awareness — he had support from his family, friends and work colleagues and it’s very encouraging that people in Fleet are supporting a charity in Fleet.”

Thanks

Mrs Rust took the opportunity to thank groups that have supported the association down the years, in particular the Fleet Lions.

There is further good news with trials involving the drug Losartan in America.

The good news is that Losartan is not a new drug. It is already widely used to treat high blood pressure and some forms of diabetes.

However, it is a little too early for Mrs Rust to raise any UK hopes — although there might not be too long to wait.

All she would say was: “We are looking forward to being able to announce some good news that would benefit families, but I don’t want to say anything that might jeopardise trials we have waited 27 years to see.”

The charity welcomes people with computing skills to help out at the office in Fleet. Call 01252 810472 for details.