Thalassemia: Need for a prespective here

[Vik]

Government takes bold steps to fight blood disorder

KUNDASANG: Health authorities are taking bold measures to combat thalassaemia by urging couples who carry the faulty gene either not to marry or have children.

Health Minister Datuk Seri Dr Chua Soi Lek said battling the hereditary disease on all fronts began with discouraging couples who are both thalassaemia gene carriers from getting married, as there was a high risk of their children contracting the gene.

“Love is blind, (but) sometimes we cannot be blind to the risks involved, so it is important that such couples are properly counselled,” he said when launching the national-level International Thalassaemia Day. Dr Chua said that if such couples decided to go ahead with the marriage, then the authorities would advise them to avoid having children.



Dr Chua taking Amy Sheera Ahmad’s blood sample during a health exhibition in Kundasang on Thursday held in conjunction with International Thalassaemia Day on May 8.

In cases where a child is conceived, the authorities would recommend abortion, although a final decision lay with the couple themselves, taking into consideration their religious practices, he added.

Malaysia currently has 800,000 to 1.2 million thalassaemia carriers nationwide.

Dr Chua said his ministry was also targeting secondary schoolchildren for thalassaemia screening, as well as helping identified carriers not to be discriminated against.

Thalassaemia is a genetic disorder which destroys red blood cells. While some are only carriers of the gene, those affected by the disease known as “thalassaemia major” have to undergo regular blood transfusions to replace damaged red blood cells at least once a month.

But the blood transfusion causes high levels of iron deposits to build up in their heart and kidneys, which could lead to system failure within 10 years.
Dr Chua said a gelatine agent was introduced through an infusion pump to remove the iron deposits in the body. “The patients will go through a normal life but there is a lot of suffering,” he said.

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This news article appeared in the Malaysian Newspaper - TheStar on May 4 2007
http://thestar.com.my
http://thestar.com.my/news/story.asp...708&sec=nation

[Vik]

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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The above letter on PETPOSITIVE blog. Petpositive is a Malaysian organization - The Malaysian Animal-Assisted Therapy for the Disabled and Elderly Association (PETPOSITIVE) Persatuan Terapi Bantuan Haiwan untuk Warga Kurang Upaya dan Warga Emas, Malaysia
http://petpositive.blogspot.com/2007_05_01_archive.html