Flip through the latest issue of Gulf Weekly.
The World Health Organisation (WHO) is looking at Bahrain as a model in the fight to eradicate the life-threatening condition - sickle cell anaemia.
After years of dedication, determination, research and hard work, a team of experts has been responsible for helping to reduce the number of newborns affected by the disease.
The Bahrain National Hereditary Diseases programme started in 1984.
In 1991, the Bahrain National Hereditary Anaemia Society - BNHAS was formed with the objective of raising awareness about genetic blood disorders and the methods of prevention among the Bahraini population and also reducing the incidence of these conditions.
This was shortly after discovering, in 1990, that hereditary anaemias were the third most frequent diagnosis at Salmaniya Medical Complex (SMC).
Dr Shaikha Salim Al Arrayed, president of the society and head of the genetic department at SMC, played a pivotal role by discovering the gene prevalent amidst the Bahraini community.
In 1992, she characterised the gene as the Asian heplotype which is a milder version of the disease as opposed to its African heplotype counterpart.
Dr Al Arrayed said: "The largest number of these patients is found in India, especially in the tribal groups. The sickle cell in India is similar to the traits found here in the Middle East."
Dr Al Arrayed has been nominated for a Nobel Prize for her inspirational role and dedicated work in fighting against sickle cell disease and genetic conditions in the kingdom.
Intense research and studies in the kingdom have also shown that the number of babies affected with sickle cell disease has reduced.
Dr Al Arrayed said: "The fact is well observed among the hospital staff that there is a decline in the number of younger patients as compared with the older.
"The public is now well aware about the disease thanks to the efforts of the committee and is also demanding an improvement in the treatment offered."
According to a neonatal screening for genetic blood diseases comprising of 1,995 newborns, delivered in the Ministry of Health maternity hospitals, 18 were found to be affected with Sickle Cell Disease (SCD) with an incidence of 0.9 per cent in 2002 as compared to 2.1 per cent between 1984 and 1986.
The study was performed between February 1 and April 30, 2002 by a group of experts including Dr Al Arrayed .
This indicated a gradual decline in disease frequency over the years.
A survey published in the Australian and New Zealand Journal of Obstetrics and Gynaecology in 1988 had shown that the maternal mortality rate in Bahrain between 1977 and 1986 was 33.9 per 100,000 live births.
Sickle cell disease was found to be an underlying cause in about one third of the maternal deaths.
The report noted that the second five-year period showed a significant reduction at 26.9 per 100,000 compared to the first five-year period with 42.3.
These reduced rates were also attributed to factors such as health education, premarital counselling and family planning.
Dr Al Arrayed explained: "This is the effect of increased awareness among people as a result of the educational and awareness campaigns that were started more than 25 years ago."
The BNHAS aims to provide comprehensive information about how to live with the disorder and how to prevent the complications of sickle cell disease.
It also includes emotional and social support.
Dr Al Arrayed said: "We formed the society to make people aware of the disease - what is it, how to prevent it, how to treat it and how to reduce the frequency of the crises sufferers are prone to.
"The society was formed with a team of experts, doctors, nurses, patients and in association with the Ministries of Health, Information and Education to help in beginning a campaign to control the genetic blood disease. I could never do it alone.
"The 27 years of campaigning and awareness has helped immensely - we have done many educational campaigns by releasing booklets, conducting programmes, providing pre-marital counseling and conducting student and newborn screening.
"It would have been very difficult to go to every home and so we used the media - both print and broadcast. We gave lectures to students, arranged volunteer work with doctors to give lectures in schools and clubs and also provided counselling."
It has also been recently reported that the Ministry of Health has formed a national committee for improving the treatment for existing sickle cell anaemia patients and 'to draft a protocol to treat such patients'.
The committee is headed by deputy chief of staff at the hospital Dr Hussain Al Muharraqi and has representatives from the departments of haematology, paediatrics and medicine as well as the ministry's legal department.
No permanent cure has been found for the condition, explained Dr Al Arrayed. "Nowadays there is an option of stem cell transplantation and bone marrow operations. However, these are still in their initial stages," she said.
Since sickle cell anaemia is an inherited condition, individuals who inherit the genes can't avoid developing it although they can take steps to reduce its complications.
Sufferers can take preventive measures such as avoiding damp or cold atmospheres, taking prescribed medicines, having a healthy and balanced diet, avoiding smoking and by getting immediate medical care when necessary.
Dr Al Arrayed added: "In the past 10 years, we have screened nearly 60,000 students in the student-screening programme.
"We have also been continuously conducting newborn screening and now have noticed that there is a further decline from the 0.9 percentage of newborns affected.
"We plan to continue with our procedures - education, awareness and screening - and help in eradicating this genetic disease from the kingdom."
