Courtesy by: theasiannews.co.uk
Despite thalassaemia mainly affecting those of Asian heritage, the vast majority of British Asians admit they have never heard of the potentially fatal genetic blood disorder.
New research shows that nearly two-thirds (63 per cent) have either never heard of the disease or know little about it.
Ignorance is particularly prevalent in the young, with more than seven-in-ten unaware of the disease.
According to the survey, supported by the UK Thalassaemia Society (UKTS), of those who had heard of the condition only half knew that the severe form can be fatal. While carriers of beta thalassaemia are normally healthy, a fifth of survey respondents also admitted there was a stigma attached to being diagnosed with thalassaemia among the Asian community – with a third of people admitting they would hide the fact that they suffered from the disorder and only 55 per cent saying they would tell their family about their condition.
Thalassaemia refers to a group of genetic blood disorders that affect the body’s production of haemoglobin, the oxygen-carrying component of red blood cells. The most severe form of the condition, beta thalassaemia major, can be fatal. Those affected – and there are currently over 700 sufferers in the UK – do not produce enough healthy mature red blood cells, which are vital in carrying oxygen around the body.
If a man and woman who are both carriers have children together, there is a 25 per cent chance with each pregnancy that the baby will be born beta thalassaemia major. An early symptom of this most severe form of thalassaemia is acute anaemia before the age of one.
Those affected then need regular transfusions plus constant medication and monitoring throughout their life to prevent dying from their condition.
Commenting on the research findings, Elaine Miller of the UK Thalassaemia Society said: “It is really quite shocking that awareness of the condition remains so low amongst those most vulnerable to the disorder. We urgently need to address this issue and de-stigmatise Thalassaemia amongst British Asians.”
On learning about the disease, over 90 per cent of respondents called for increased awareness of the condition.
Approximately 214,000 people in the UK carry the gene that passes the condition through the generations, and 79 per cent of sufferers have parents of Indian, Pakistani or Bangladeshi origin – the UKTS are committed to encouraging these groups to visit their GP in order to be tested for the thalassaemia gene.
The All Party Parliamentary Group summer reception for thalassaemia and sickle cell took place on Tuesday (14 July) to highlight the efforts of the UKTS in bringing thalassaemia to the forefront of political activity.
For more information visit http://www.ukts.org