A LIVERPOOL man affected by a rare genetic disease inspired Royal Liverpool Hospital to become a world leader in the treatment of his condition.
Robert Gregory, 63, from Childwall, has a debilitating condition called Alkaptonuria which is known as Black Bone Disease because it makes sufferers bone go black and brittle.
Ten years ago he founded the AKU Society with his doctor, Dr Lakshminarayan Ranganath, and campaigned tirelessly for a centre for the genetic disease to help future generations.
Yesterday (Friday, Jan 18) he saw his vision become a reality when the Robert Gregory National Alkaptonuria Centre was officially opened at the Royal.
It puts the hospital at the forefront of care in this field as it now houses the world’s first treatment centre for AKU.
Coupled with this, researchers have announced the start of a major international £8m clinical drug trial which could benefit patients with the condition.
Until now there has been no treatment for AKU, it is hoped the drug Nitisinone could alleviate the joint and back pain associated with the disease and, if given early enough, could allow sufferers to lead a normal, pain-free life.
Mr Gregory said: "I am absolutely delighted that my vision for a service has been realised.
"This really is wonderful news for everyone involved, not just at the AKU Society, but all those people in Liverpool and beyond who have worked so hard to help treat patients with this disease.
"It means that recently diagnosed patients will no longer have to suffer alone like I did when I was first made aware of my condition.
"The fact that this service is based in my hometown of Liverpool and is leading the world in this field is something I am extremely proud of. I am truly honoured that it bears my name."
Alkaptonuria (AKU) is classed as an ultra rare disease affecting around one in 250,000 to one in a million people worldwide.
It is an inherited condition that causes urine to turn
black when exposed to air. People with alkaptonuria typically develop arthritis,
particularly in the spine and large joints.
But they can also develop heart problems,
ruptures (of muscles, tendons and ligaments), kidney stones and prostate
The decision by the Department of Health to award the service to Liverpool follows an intensive series of bids and is the result of ten years collaborative work
by the Royal, the AKU Society and the University of Liverpool.
The announcement of the Liverpool centre comes 110 years after alkaptonuria was first discovered by Sir Archibald Garrod.
As part of the drug trial into nitisinone 140 patients will be recruited to three treatment centres Liverpool, Piestany in Slovakia and Paris.
The AKU centre was officially opened by Lord of Witley & Hurcott, Worcestershire, Ken Ward-Atherton, who is patron of the AKU Society and unveiled a plaque.
Lord of Witley & Hurcott, Kenneth Ward-Atherton said: "This centre would not be here if it were not for one man – Robert Gregory. It is an honour to officially open the Robert Gregory National Alkaptonuria Centre, on his behalf. This centre represents not only the culmination of years of hard work from Robert, Dr Ranganath and many others, but also the beginning of a new chapter in the fight against AKU."