Lamb Raises Awareness of 'Hidden Disorders' Sickle Cell and Thalassaemia

11.00.29am GMT Thu 12th Jul 2007

Norman Lamb MP took a step towards uncovering the hidden disorders of sickle cell and thalassaemia at a reception held at the House of Commons during Sickle Cell Awareness month. The parliamentary meeting highlighted the difficulties for people living with thalassaemia and sickle cell and raised awareness of the challenges they face.

The meeting was organised by two patient groups who work to raise awareness of these diseases; the UK Thalassaemia Society (UKTS) and the Sickle Cell and Young Stroke Survivors Group (SCYSSG). Paul Clark MP hosted the event which was attended by MPs, local councillors, doctors and patients.

Norman Lamb said: "Sickle cell disease is the most common genetic disease in England, yet there is little public awareness of it and thalassaemia. This meeting was an ideal opportunity to highlight the effects of these diseases on the people forced to live with them and go one step towards erasing the stigma that exists around them."

Key Speaker Baroness Howells of St Davids said: "These conditions primarily affect minority communities and have a great impact on their quality of life. I hope that this meeting can increase the awareness of sickle cell disease and thalassaemia so that quality of life is a right, and not only a hope.

Mike Michael, President of the UKTS said: "I've lived with thalassaemia all of my life. Raising awareness of thalassaemia is a top priority of the UKTS and this meeting has brought together people who can really make a difference. It is no longer only a childhood problem as there are treatments available which extend the lives of thalassaemic patients. But we need to raise awareness of thalassaemia so local PCTs and the NHS understand the importance of making these treatments available.

Carol Nwosu, Founder of the SSYSSG said: "Sickle cell affects many people, including my son. July is Sickle Cell Awareness month, but it so often comes and goes without anybody knowing - I hope this meeting today will help raise awareness so that people understand just how much sickle cell affects us.

"We need to do as much as we can to highlight the issues surrounding hidden conditions like sickle cell. This meeting has done just that, and I am very thankful more people now know what having sickle cell means."