Apollo Hospitals introduces coagulation screening test

September 7, 2010

Courtesy: thefinancialexpress-bd.com

Apollo Hospitals, Dhaka has introduced a coagulation screening test in single blood sample in its lab medicine department, according to a press release.

Coagulation screening test provides precise diagnosis of any abnormality of blood coagulation as in hemophilia, thalassemia, blood malignancy, other malignancy or any genetic disorder.

This screening consists of a set of seven tests like Bleeding Time (BT), Clotting Time (CT), Platelet count, Prothrombin Time (PT), Activated Partial Thromboplastin Time (APTT), Thrombin Time (TT) and Fibrinogen assay in a single blood sample collection.

The report will be delivered same day after 5:00 pm if sample is received within 12:00 noon, if later then it will be delivered next day after 10:00 am, the release added.

Thalassemia: Learn something, will you?

July 11, 2010

Courtesy: tribune.com.pk

For over four years, Fight Against Thalassemia (FAiTh) has been trying to convey a simple message across to the government: to pass and implement a Pre-Marital Mandatory Tests Bill in the country. This is a simple request for a simple bill and a simple solution to highly complex problems that our society faces today.

Even though right now there are no government-based Thalassemia treatment centers, this situation will improve soon as there will soon be as many as seven Thalassemia treatment centers run by the Government of Pakistan. The exact date of when these centers will be setup however, only two G’s know: God, and Government.

FAiTh has attempted to utilize a myriad of media: from print to web-based, from television to spreading awareness on its own through the help of media owners. While FAiTh was busy with awareness campaigns, the Khyber-Pakhtunkhwa assembly sent us a shocking, yet pleasant surprise: they passed the Pre-Marital Mandatory Tests Bill.

This was a cause for celebration! However, this overwhelming joy was quickly swept over by another question: When a conservative province like the Khyber-Pakhtunkhwa is progressive enough to pass the bill, why are the other provinces so reluctant?

The North West is a place where the men do not want anyone to see their female counter-parts. I salute them for passing the bill and giving other provinces what we call, “ghairat ka dose.”

And, just after a few short days, the Sindh Assembly gathered all of its courage, and passed the resolution as well! What a brilliant milestone!

This is all great! However, what the Punjab Assembly did comes as a big slap across the metaphorical faces of all the other Provincial Assemblies. I understand that I am going to be opposed with many objections after this post. Even as I wrote this, I came up with several queries myself, such as it will be an invasion of privacy or that more problems will be caused for girls and aged women who are still awaiting their match.

I am supporting this bill because of the medical check-up made necessary. This can surely help to put a full stop to the birth of 5,000 Thalassemic children every year. It is not the children, that shouldn’t be born. It is Thalassemia. I have mentioned in my earlier posts as well, that I am representing Thalassemia patients of Pakistan. I am their ambassador, and I speak for them when I assert that they will be happy with this new law.

Now, the National Assembly needs to get some ‘ghairat‘ and do their part: implement the law countrywide!

Blood disorders prompt pre-marital tests in Oman

July 7, 2010

Courtesy: gulfnews.com

Muscat: A larger percentage of Oman’s population suffers from one or the other blood disorder, prompting health authorities in the country to consider pre-marital blood tests to bring down the number of such cases.

“About 58 per cent of citizens carry at least one of the blood disorders genes,” Dr Salam Al Kindi, SQU Head of Haematology, said at a press conference held at the Crown Plaza Muscat on Monday.

He pointed out that 47 per cent of the Omanis suffer from alpha Thalassemia gene, 5.5 per cent have sickle cell disease, and 2.62 have beta Thalassemia gene and 1.6 per cent have other haemoglobin variants.

“Now, Oman Hereditary Blood Disorder Association (OHBDA), together with the government, is slowly trying to introduce the aspect of pre-marital blood tests in the country,” says Dr Al Kindi.

“Up to 160 babies per year in Oman are born with sickle cell disease while 15 are born with Thalassemia, which proves the severity of this problem,” stressed Thuraya Bint Saif Bin Sultan Al Hosni, OHBDA Vice-president.

“One of the association’s main aim is to encourage pre-marriage genetic screening to reduce the number of new babies afflicted with these life threatening and terrible diseases,” she pointed out.

Sickle cell disease patients go through very severe pain attacks, chest infections and bone necroses, frequently needing hospitalisation to receive pain killers and other medications, which puts strain on the patient and their families.

Thalassemia patients require monthly blood transfusions and can face problems with their heart, lungs and spleen, which in many cases can prove fatal. Frequent attacks put patients and their families into stages of depression and sometimes lead to loose their work and quit schools.

“We do not discourage marriages, but we need people to go for pre-marital blood tests,” suggested Dr Al Kindi.

He said that it was only a single blood test that would reveal all diseases.

No test, no nikkah (Part 2)

June 20, 2010

Courtesy: tribune.com.pk

After my post “No test, no nikkah”, I have got some appreciation and at the same time some objections as well.

Here is the reply to those objections:

Several people asked me how they can ask their partners to get tested. “It doesn’t look good,” they said. A friend of mine said “The in-laws might start beating me Ayesha!” and I simply replied, “Just for once think of your generation – that beating won’t be anything then.”

Then, there are people who ask me who am I or the government to stop them marrying their love if both are Thalassemia minor.

Who said you can’t marry them?

No test, no nikkah doesn’t mean that you can’t marry your love if both of you are Thalassemia minor, it just means that for a precaution get yourself tested. If both are found minor then in every pregnancy you will have to get a test called “Prenatal diagnosis or prenatal screening”

What is prenatal test is for?

Just to make sure that your child does not have Thalassemia major (disease state), and God forbid, if the baby does have the disease then you can abort the baby within 120 days of the pregnancy.

Is it too difficult getting tested?

Then, for once imagine this: will you be able to bear your child pointing his/her finger at you and saying “Mom/Dad, you are responsible for my illness”? Will you be able to bear seeing your child getting pricked by needles, and all the other painful procedures that come with being a Thalasemmia patient? No…you won’t be…

It’s so difficult to get your partner tested?

Okay, don’t ask them for it, go and get YOURSELF tested, and if God forbid you get some irregular result then you can ask your partner to get tested. If the result is normal then it doesn’t matter whether or not your partner carries Thalassemia Minor gene, because it won’t do any harm. In that case just a kid or two will carry a minor gene, that’s it.

Is it still difficult?

You might think I must have pointed fingers at my parents too. Or maybe I feel bad for having Thalassemia and that is why I am writing such posts? Let me assure you that is not the case. I have seen two-year-old children at the transfusion center – even kids younger than 2.

I have seen how they get pricked, how they cry, how the nurses get their veins. If you see it yourself, you will cry… I bet you will.

And since I have been seeing this for so long, I really want to save our next generation. Wont you step ahead and help me? I don’t want another child to get pricked with needles because of lack of awareness, please?

Just one blood test can save your generation, what else do you want now? If you still can’t get it … then it’s simply useless to tell you anything…

And sorry people, but your objections are overruled and now you are left with no choice but to get yourself tested.

FAiTh’s dream : Thalassemia free Pakistan!

No test, no nikkah!

June 20, 2010

Courtesy: tribune.com.pk

Almost every third girl gets married to a guy she doesn’t know, has never met or never talked to before. The guy’s family just saw the girl somewhere, they sent the proposal and if the girl’s family didn’t find anything objectionable then everything is final – the date is fixed, venue decided…and they get married to each other.

Now, the happily married couple is expecting a new family member, and when the new family member is born, they get to know that the baby is having a disease called Thalassemia. They go blank. They run to doctors. They try to do what ever they can do. In the end, they get to know that both of them were Thalassemia Minor which is why their baby is Thalassemia Major.

Minor + Minor = ?
25% chances are of Thalassemia Major
50% chances are of Thalassemia Minor
25% chances are of Normal

Sadness takes the place of happiness soon…. And the baby becomes used to hospital visits, transfusions, needles and medicines.

Now the question is: Where did it all begin? What was the mistake they made?

Till a few years ago, people used to ask parents of Thalassemia major that if they were cousins? Did they get married within the family? Yes, Thalassemia genes do get inherited, but it is not only in cousin or interfamily marriages, it can even happen when a guy and girl do not know each other and get married and when they never get tested…

Asking the couple to get the test done before marriage is like asking one to commit the biggest SIN!

But why can’t you think, just for once, for your next generation? Why don’t you see the bigger picture?

When are we going to stop being so narrow-minded?

A few months ago there was a comment on my blog which said:

“No Test, No Nikkah!”

I feel the government should pass a bill about this issue soon. There are many countries that have already started this, why can’t we? And when will we?

We all know our government so why don’t we start something on our own too?

What you can do as an individual?
* You can get yourself and your partner tested before marriage
* Ask your friends to do the same
* If someone you knowis getting married ask them if they have gone for the test
* Spread awareness about this to family, friends, colleagues, neighbours and everywhere…TO SAVE THE NEXT GENERATION!

The test is called HB electrophoresis and it is not very expensive…

So, when are you going to get yourself tested?

Call To Adolescent Males To Undergo Thalassaemia Screening

May 15, 2010

Courtesy by: bernama.com

KUALA LUMPUR, May 8 (Bernama) — Adolescents, especially males have been advised to undergo screening for thalassaemia, an inherited blood disorders that affect the body’s ability to create red blood cells.

Health Minister Datuk Seri Liow Tiong Lai said awareness of the disease among males was still low as they accounted for only 20 per cent of 206,390 people who underwent screening last year.

He said 29,326 people took the thalassaemia test in 2008 and the figure grew to 206,390 last year.

“I appeal and encourage more young people, especially males to take the test as it only need to be done once in a lifetime,” he said when opening the International Thalassemia Day celebration with the theme “Thalassemia: Knowledge is Strength” here on Saturday.

His text of speech was read by Health deputy director-general Datuk Dr Hasan Abdul Rahman.

Liow said adolescence and early adulthood was the most suitable stage to undergo the test as intervention counselling was more effective at a young age.

He said a thalassemia prevention programme can be done at several selected hospitals, especially those that provide thalassaemia treatment as well as 345 health clinics equipped with laboratory equipments to carry out thalassaemia gene carriers screening.

According to the National Thalassaemia Register, to date 4,768 thalassaemia patients have been registered compared to about 2,500 people in 2004.

Liow said at least one out of 20 people in the country was a thalassemia carrier or approximately 600,000 per a million population.

Patients suffering from thalassemia are required regular blood transfusions. Thalassaemia carriers do not show any signs of abnormalities or health problems.

Prevent thalassemia at early stage

May 15, 2010

Courtesy by: gulfnews.com

Abu Dhabi: To prevent hereditary diseases such as thalassemia from spreading, the UAE Government should introduce mandatory pre-marital tests for secondary school pupils, an Emirati doctor said.

According to the World Health Organisation, one in 16 Emiratis suffers from the disease, and requires multiple blood transfusions, putting them at risk of an iron-overload, which can cause irreversible damage to kidneys and the heart, leading to more serious and life-threatening medical conditions.

“Emiratis tend to marry their relatives, which increases the risk of developing thalassemia. Even though the UAE Government has introduced mandatory pre-marital tests, we can prevent the disease further, by diagnosing pupils in schools, before they even decide to engage in a relationship,” said Dr Saqqaf Alawi Al Saqqaf, consultant paediatrician, in charge of thalassemia patients in Mafraq Hospital.

The government covers the treatment expenses for thalassemia, which is estimated to reach a minimum of Dh30,000 per year.

“If each of the married couple is carrying the thalassemia trait, chances are that 25 per cent of their children can end up dead; another 25 per cent chance that they end up normal, and a 50 per cent chance that they carry the gene,” said Saqqaf.

Zainab Khazaal, manager of the Disease Prevention & Screening Centre in Abu Dhabi, a subsidiary of Abu Dhabi Health Services Company, affirmed that pre-marital tests are currently mandatory for both expatriates and Emiratis. However, only tests such as HIV, syphilis, and hepatitis B are compulsory.

“Testing for thalassemia is not compulsory in a pre-marital test. However, people do have the option of testing for hereditary diseases such as thalassemia during a pre-marital test, which we always advise them to do at the centre, especially if they have a history of thalassemia in their family, or are married to their relatives,” Khazaal told Gulf News.


Binay Shetty, executive director of NMC Group, feels introducing the pre-marital test option among pupils is a good idea but should not be made mandatory.

“I personally think raising awareness campaigns, and introducing free screening tests to prevent hereditary conditions is a good way of preventing them. I wouldn’t encourage compulsory tests for hereditary diseases, but I would help make it available for the public if needed.”

Dr Shamsheer V.P., Managing Director, Lifeline Hospital Group, finds it important to make the screening methods available to the public.

He said:  If screening is widespread as in Kuwait recently, even the knowledge of the potential to have children with a disease does not stop 45 per cent of tested couples from proceeding to marriage

Saudia Arabia, Nigeria and some Pakistani regions have introduced compulsory screening. Only some USA states now insist upon Syphilis testing before marriage.

The main benefits are in those countries where a specific disease such as Thalassaemia, Hepatitis B or HIV i common

Early passing of pre-marriage mandatory Thalassemia testing law demanded

May 15, 2010

Courtesy by: allvoices.com

Karachi: Over 11.6 million people have Thalassemia Minor in Pakistan while the country houses over 100,000 Thalassemia Major, a life-threatening disorder of the blood that is completely hereditary, the journalists were informed at Karachi Press Club at a press briefing by head of a major Blood Bank demanding early legislation of law to make pre-marriage Thalassemia testing to help reduce the fatal disease.

This was stated by the Chief Executive Officer of one of the biggest and most trusted Husaini Blood Bank, Asad Ali. Flanked by Deputy Speaker of Sindh Assembly Ms. Shahla Raza; provincial Minister for Jails Haji Muzaffar Shijra; provincial Labor Minister Ameer Nawab; central leader of Pakistan Muslim League (Nawaz) Syed Hafeezuddin; Naib Ameer Jamaat-e-Islami Meraj-ul-Huda, Secretary General of Pakistan Tehreek-e-Insaf and leader of Jamiat Ulema-e-Islam Rahman Syed Mumtaz Haider, said that despite the unanimous passage of the resolution moved by Haji Muzaffar Shijra the law to make pre-marriage Thalassemia testing was not yet passed in to a law to help bring down incidence of Thalassemia Major. “While Thalassemia Minor is common and those who have it live a normal life the probability of having this totally hereditary disease shifted to children of couples having it is resulting in pushing Thalassemia Major in the country.”

The journalists were informed that in many countries in Pakistan’s neighborhood like India, Saudi Arabia and Iran have made legislation that makes pre-marriage Thalassemia testing mandatory to help reduce Thalassemia Major incidence. However, the failure to make law has pushed Thalassemia incidence to dangaerous levels that undermines the very health of the nation.

The speakers said that if an adult Pakistani make a habit of donating just one bottle of blood a year it would help totally eradicate the acute shortage of blood in the country which stands at around 7,600 bottles a day. The journalists were also informed that each year around 6,000 babies are born in the country with Thalassemia Major and they need around 25-30 bottles of blood each year to keep alive.

The speakers also demanded that a column should be added in the Nikahnama (marriage registration certificate) to certify if a bride or a groom has Thalassemia Minor because marriage of Thalessemiazed parents almost certainly mean that one of the four children born to them would have Thalassemia Major, two from Thalassemia Minor and that only one could be a normal child.

The speakers requested the media representatives to help create the much needed awareness to understand the harming consequences of marriage of Thalassemia Minor because it poses grave risks to their children.

The press briefing coincided with the World Thalassemia Day which is celebrated on May 8 every year.

Minister of Health Inspects Pre-marriage Central Lab in Sharjah

May 15, 2010

Courtesy by: wam.org.ae

WAM Sharjah, 1st May 2010 (WAM) — His Excellency Dr. Hanif Hassan, UAE Minister of Health, inspected the pre-marriage central lab in Sharjah and viewed the functions of the laboratory tests and its preparations for receiving and operating modern equipments to be provided to the laboratory in the near future.

He was accompanied by Dr. Salem Al Darmaki, Acting Director General, Dr. Mahmood Fikri, Executive Director for Health Policies and Ahmed Al Nuaimi, Acting Director of Primary Healthcare Central Administration.

He was briefed about the progress of work in the laboratory and the required services for pre-marriage test results in order to avoid infectious and genetic diseases as well as the reviewed steps starting from receiving samples, drawing conclusions and identifying the development sizes of equipments and devices in addition to the future plans of upgrading the services of the laboratory.

“We assure the importance of correcting misconceptions among the public about genetic diseases and emphasize our efforts in answering their questions in a scientific and credibility manner through clinical testing and counseling. The Ministry also seeks to implement the goals of the program in order to help society members avoid physiological, financial and physical burdens for having children with genetic diseases”, His Excellency elaborated.

Furthermore, Dr. Nora Al Suwaidi, Director of pre-marriage tests at the Ministry of Health, emphasized the importance of pre-marriage tests as they prevent more than 60% of congenital malformations and 100% of genetic diseases such as thalassemia and cell anemia.

Dr. Al Suwaidi stated that the tests reduce transmission of infectious diseases from one member to another through early detection and treatment and protect the fetus from these diseases too. Unfortunately, such diseases may lead to either the death of babies, mental disabilities or birth defects. Hence, the costs of caring for these children are approximately AED 3 million during his/her lifetime.

The adopted tests at the central laboratory include: genetic blood disease including blood type; rhesus factor disease, beta thalassemia, cell disease, hemoglobin in addition to other infectious and sexually transmitted diseases such as: AIDS, viral hepatitis B, viral hepatitis C, sexually transmitted diseases between spouses (syphilis), and immunization against German measles for women.

Furthermore, Dr. Mahmood Fikri, Executive Director for Health Policies at the UAE Ministry of Health, explained that the services provided by the testing program include information about genetic family medical history, blood tests, counseling sessions for needed cases and other information vaccinations especially German measles and hepatitis B.

He said: “There are 10 centers or clinics which provide testing services all over the UAE. We are also working on the addition of new advanced equipments to the central laboratory and provision of integrated services in order to establish it as a referential center for genetic diseases tests in the country”.

Dr. Fikri added that the program trains medical and technical staff of the testing and counseling clinics on the methods of conducting personal interviews with couples wishing to get married and making the necessary medical tests. “In future time, all testing centers will be connected electronically with a direct link to the Ministry of Health and health authorities in Abu Dhabi and Dubai”, he concluded.

Statistics of the Center for Arab Genomic Studies for November 2007 indicated that the number of genetic diseases in the UAE reached 240 diseases of which: 82 caused by inbreeding marriages, while 26% of the relative marriages are of first degree. The testing procedures and medical tests approved by the UAE Ministry of Health contributed to the detection of some cases that could have led to unexpected genetic diseases yet they have been treated positively and the marriage steps have been completed.

According to the latest statistics between January and December 2009, around 19.285 people of which 10.956 locals conducted the pre-marriage tests. The tests indicated that 1113 local and expatriate cases were discovered as genetic blood diseases including: beta thalassemia, anemia, E,D and C hemoglobin differences and other blood diseases.

Newborn Genetic Screening

May 15, 2010

Courtesy by: wcbstv.com

There is nothing more important to parents than their child’s health, but sometimes a child who looks healthy may not be.

However, there’s one test that can find illnesses hiding in plain sight, and even save your child’s life.

James Stamateris is like any 12-year-old baseball enthusiast, but he has a serious blood disorder called thalassemia major. The life-threatening illness can be picked up at birth, but in James’ case, it wasn’t.

“My doctor, I assumed, did the appropriate test, and genetic testing wasn’t offered at the time,” mother Amy Celento said.

The condition was diagnosed almost by accident by a routine blood test when he was a year old. Now, James is treated with blood transfusions every three weeks. The treatment immediately boosted his energy and personality.

“His caregiver at daycare, the first time he had a transfusion, they said, ‘oh my gosh, James is playing with everyone,'” Amy Celento said.

Now, most children with conditions like thalassemia major are diagnosed within days after birth by automatic genetic screening, done by a quick heel prick and a drop of blood. Most states test for more than 30 different disorders.

“These disorders are predominately ones that the child appears perfectly well,” Dr. Patricia Giardina, of New York Presbyterian Weill-Cornell, said. “Even the pregnancy would have gone perfectly normally, but lo and behold, the child might have a rare disorder.”

Thanks to newborn screening tests, nearly 12,000 babies each year are diagnosed with serious or life-threatening disorders, and the conditions are picked up before the symptoms even start.

“Early detection can oftentimes lesson the complications or symptoms of the disease, and perhaps even prevent complications from occurring,” Dr. Giardina said.

A growing number of parents are opting out of the testing over confidentiality concerns, but experts say there’s no reason for worry.

“Confidentiality is something that we highly respect in medicine, and we’re very cautious about preventing information from being released without the families’ permission, “Dr. Giardina said.

James Stamateris’ mother says the benefits far outweigh the risks.

“I would say do it,” Celento said. “If it’s an option, then it’s being offered to you. Do it.”

In New York State, genetic screening is done automatically, unless a parent chooses to opt out.

The information is kept under lock and key at the State Department of Health. Parents can request for their children’s records to be returned to them at any time.

More than four million children undergo genetic testing each year.

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