Opinion
Saturday May 5, 2007
‘Bad’ blood not a setback
WE REFER to your report, “Govt takes bold steps to fight blood disorder” (The Star, May 11) on International Thalassaemia Day.
Petpositive welcomes the attention that has been given to an under-publicised condition like thalassaemia that is thought by medical experts to be one of the most challenging of inherited diseases of the blood in which haemoglobin fails to form properly.
We appreciate the resolve by the authorities to help prevent acts of discrimination against carriers of the disorder.
However, we are deeply concerned that the story seemed to only portray an overly negative side of those with the disease.
It was suggested that couples with the “faulty gene” should not marry, think of having children - and even have an abortion if there was a pregnancy.
Petpositive is concerned about the religious implications of such advice and disturbed about ethical concerns of how we might view the disabled community one day.
Would a “faulty gene” reasoning be restricted to only thalassaemia or also perhaps be used in a broader sense to include other disabilities in future?
Whilst your report did point out some of facts of the horrible struggles that Malaysians (and others) who have the disorder have to endure throughout their lives - it wasn’t a full picture.
The Internet is full of testimonials of thalassaemics who are leading a much better quality of life today than they ever did a quarter of a century ago - especially those in foreign countries.
Although the condition is still very much a part of their lives, it isn’t the only thing that matters to them. Thalassaemic children successfully grow up into adulthood.
More of them even now get married and start families - including those with the more serious form of the condition called thalassaemia major.
Support groups for thalassaemics say it is very important to make a commitment with life and to know that it is worth living.
There is also encouraging documented evidence from the Paediatric Hematology-Oncology-Immunology clinic in Las Vegas, Nevada, for instance, of how animals are being used to offer special therapy especially for children with haematological conditions such as thalassaemia, haemophilia and sickle cell disease.
What patients need are supportive caregivers, peer support and involvement with local thalassaemic societies in order to lead a happy life.
We should concentrate on promoting better healthcare by making it more affordable and accessible for those who require it most to be able to get it - no matter what.
ANTHONY SIVA BALA THANASAYAN,
President,
Malaysian Animal-Assisted Therapy for the Disabled and Elderly Association (Petpositive).
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