KOTA KINABALU: Couples are reminded to take a blood test to ensure they are not thalassaemia carriers before planning to have children.
Couples with genetic thalassaemia traits should consider avoiding pregnancy or at least equip themselves with necessary knowledge about the disease and its treatment before even thinking about having children.
State Health Department director Datuk Dr Yusof Ibrahim said knowing how to manage thalessaemia disorder was essential to ensure children suffering from the disease could grow up healthy and have a normal life.
“Thalassaemia children can still have a normal healthy life provided proper treatment is given from the start.
“It is a long-term and continuous treatment that requires dedication and sacrifices from both parents,” he said when officiating at the Parents of Children With Thalassaemia Workshop here yesterday.
In most cases, he said parents diagnosed with thalassaemia traits would opt to adopt instead of having their own children, or in cases where pregnancy had already occurred, go for abortion.
According to Dr Yusof, providing treatment and care for children with thalassaemia could be very demanding, both financially and emotionally.
Although the disease can be treated through bone marrow transplant, the procedure was expensive and the facilities needed were still considerably rare and therefore difficult to access.
However, he said this does not mean that hopes are all gone for parents with thalassaemia children.
“The ultimate objective is to achieve zero thalassaemia and this can only be done with awareness and effort from everyone, especially the parents.
“Apart from preventive measures, focus are also given to providing treatment and care for children with thalassaemia, and various strategies have been planned and implemented by the government for this purpose.
“Many patients with this disease are now living a healthy normal life but there are still many challenges specially here in Sabah that we need to tackle,” he said.
Highlighting the difficulties faced by parents in getting treatment for their children suffering from thalassaemia, Yusof said a foundation with strong funding had to be set up to help provide for the treatment, as well as in preventing the disease.
A special lab for testing thalassaemia should also be set up to enable easier screening for couples before they get married or plan to have children.
“We are also looking at how we can make bone marrow transplant more affordable and accessible to patients,” he added.
Thalassaemia is an inherited autosomal recessive blood disorder caused by excessive destruction or degradation of red blood cells.
It is caused by formation of abnormal hemoglobin molecules due to a defect through genetic mutation or deletion.
If both parents are carriers, each of their children would have a 25 per cent risk of having the diseases, hence blood screening is important, and genetic counselling and testing are recommended for families that carry a thalassaemia trait.
Both parents need to have a hemoglobinopathy trait in order for a child to be affected.
There are two types of thalassaemia and the first, alpha or mild thalassemia, does not require medical or follow-up care.
The second type, beta or severe thalassaemia, requires medical treatment and a blood transfusion regimen in order for the patient to stay alive.
Also known as thalassaemia major, this type is diagnosed with severe anaemia, usually as early as three to 18 months of age.
People with thalassaemia can get iron overload, either from the disease itself or from frequent blood transfusions, which could result in damage to the heart, liver and endocrine system if not treated.
Chelation or removal of excessive iron deposits in the blood must therefore be performed.
As of October this year, there were 1,433 thalassaemia patients recorded in Sabah, mostly detected at the Sabah Women and Children Hospital (264 cases), followed by Queen Elizabeth Hospital (237) and Duchess of Kent Hospital (163).
Worldwide, there has been a large increase in thalassaemia cases, especially in countries with no genetic counselling and screening.
Concern was growing that the disease may become a very serious problem in the coming years, one that will burden the world’s blood bank supplies and the health system in general.