Before you say ‘qubool hai’

August 23, 2010

Courtesy: tribune.com.pk

When five-year-old Affifa goes to school she carries more than the burden of books on her shoulders. “My daughter was diagnosed with Thalassaemia, a blood disorder, at the age of three,” says Wajahat Ayaz, who works as an engineer at a leading power company in Karachi.

Affifa’s problems are compounded not only by the fact that her body generates an abnormal form of haemoglobin cells, but also by her rare blood group, known as the Bombay blood type. According to Dr Saqib H Ansari, chief of the Thalassaemia programme at the National Institute of Blood Diseases, there are only seven known donors in the country who share this blood group. “Patients like Affifa survive on blood transfusions, but it becomes a huge problem when one has a rare blood group because one can’t find matching donors,” Ansari says.

However, the little girl is lucky for now. Nuzhat, a woman of 40, is providing crucial life support for Affifa. “I will donate my blood to her as long as I live,” says Nuzhat. But what will happen after that?

Ayaz, who earns around Rs30,000 a month and spends close to Rs10,000 of that on monthly treatments for his daughter, says he can only pray that a miracle like Nuzhat will be around. However, that’s not the issue which torments him each day.

“If only I knew that we, the parents, would be the cause of her illness,” laments Ayaz, without saying anything about what he would have done had he known this fact beforehand.

Thalassaemia is a genetic blood disorder which a child inherits from their parents. “If both parents are Thalassaemia minor — that is, they carry the disease but it is not active in their system — there is a 25 per cent chance that their child will be a Thalassaemia major — an active patient –a 50 per cent chance that she will be a Thalassaemia minor and a 25 per cent chance that everything will be normal,” says Ayesha Mehmood, the spokesperson for the Fight Against Thalassaemia (FAiTh). Also, if a Thalassaemia minor’s partner is normal, their children, in all likelihood, will be born free of the disorder.

initiatives

Ayaz supports recent initiatives taken in certain provincial assemblies regarding the nikahnama law that advocates testing for blood disorders like Thalassaemia, Hepatitis C and HIV/AIDS in couples before they marry. He suggests the government should make it mandatory to mention blood types on national identity cards so that potential donors can be identified.

But so far the Khyber Pakhtunkhwa provincial assembly is the only legislative body which has passed a bill making it mandatory for couples to carry out Thalassaemia and Hepatitis C tests before the marriage takes place. The law does not ban couples from getting married if they find out they are both, for example, Thalassaemia minor carriers, but it gives them the advantage of knowing what they’re getting into. Meanwhile, the Sindh Assembly has to date only passed a resolution urging the federal government to consider making such tests compulsory.

On July 08, 2010, the Punjab government’s Local Government and Community Development Department proposed eight amendments to the nikahnama law; these included complete medical check-up reports prior to marriage. However, the amendments were criticised because of the caveat that the nikahnama document must also be signed by the parents of the consenting adults and were consequently withdrawn.

Member of the National Assembly Sherry Rehman has strongly criticised the Punjab government’s move. Rehman fears the measure might increase the number of forced marriages in the country. “Having parents sign the nikahnama would have meant the return of the wali system for women. The Lahore High Court has a ruling against it,” she says. She added, however, that she was all for testing couples for disorders before marriage and would strongly advocate such a bill.

Meanwhile, Masood Alam, who is about to get married this year, voices another concern. He says that even if blood testing before marriage becomes federal law, it would be hard to convince families that it is a healthy measure. “I and my fiancée may agree, but our families might not want us to get tested because of social pressure and superstition,” Alam says.

Even Nuzhat, Affifa’s donor, says that girls in Pakistan already face a lot of problems getting married and the proposed changes to the nikahnama law may become an added hurdle.

Dr Ansari proposes a solution. “We can follow the Iran model, where the man is asked to get tested first,” he says, adding that the woman only need be tested if the man is found to be suffering from, for example, Thalassaemia minor.

Also, families can be convinced about the benefits of testing with a little persuasion, says Shahzad Shah, who married in 2009 and got himself and his fiancée tested before marriage. “After we told our families about the advantages, they themselves took us to get our blood tests done,” Shah says. He adds that today he is a proud father and his daughter has no genetic blood disorder.

Religious scholars say that while conducting blood tests is not a necessity before marriage, according to Shariah law there is no harm in doing so. Darul Uloom Karachi’s Mufti Asghar Rabbani and Jafferia Alliance’s Maulana Sheikh Hasan Salahuddin say tests can help identify problems that an unborn child might face, because in the end, the child has to suffer the consequences.


When marriages are made at home…

June 13, 2010

Courtesy: dnaindia.com

Albert Einstein, Charles Darwin, Franklin Roosevelt and HG Wells share a common link, one that goes beyond the obvious fact that these men were exceptional in their respective fields. They all married their first cousins.

That’s the path 25-year-old Ayesha Riyaz Nadaf’s family chose for her. Her parents were elated when she consented to marry her paternal aunt’s son. The reason was that she would be well-looked after in her new home. “When I was single, I received plenty of marriage proposals, but my parents accepted my relative’s offer immediately,” says Ayesha. There was little adjustment post-marriage. “We were not strangers and I knew his likes and dislikes,” she says.

While many cultures, especially in the West, baulk at the thought of marrying within the family, the situation is slightly different in India. Our law accepts unions between first cousins, if the family and community members have given their consent.

But keeping it in the family is a risky business as the children of non-related couples have a 2% to 3% risk of birth defects, as opposed to those of first cousins, where the risk is as high as 6%.

“When marrying a person belonging to the family, it is strongly advised that the couple should consult a geneticist first. If the family has a history of any genetic disorders, there is a possibility that the children may develop complications,” says Dr Jyoti Unni, gynaecology department head at Jehangir Hospital.

Gynaecologist Dr Anshu Kulkarni says that the progeny of first cousins, who get married may develop disorders such as colour-blindness, haemophilia and thalassemia.

Ayesha and her family were aware of these problems and they consulted a gynaecologist, who gave her the go-ahead to start a family. “I have a five-year-old daughter and a one-year-old son. They’re perfectly healthy children,” she says proudly.

It was a different story for 29-year-old Pushpasheel Thakar, a practising lawyer. He fell in love with his first cousin and married her despite opposition from the families. “Initially, our parents didn’t agree to our marriage, but they had to give in. We didn’t face any problems from society either,” he says.

For Thrity Dadabhoy, head of corporate communications at WLC College, marrying a first cousin was no big deal. “As our community is small, unions with first cousins are quite common. In fact, my grandparents were also first cousins, and were the children of twin brothers,” she says.

In the north, inter-family alliances are rare occurrences.

“In Delhi, where I stayed earlier, this is rare, and I faced a lot of censure,” says Thrity. But despite being happily married for 29 years, with three healthy daughters, Thrity does not recommend people marrying within the family.

“In those days, there was little awareness. Now, it is a known fact that one’s offspring might suffer from medical complications, I would advise against marrying your first cousin.”

In some pre-arranged unions, accepting a cousin as a spouse, takes a lot of adjustment. Dr Kulkarni says, “One is born and brought up in the same family as the cousin and both parties have to be mentally prepared for a major shift in family roles.” Family conflict always exists and marrying within the family may lessen it. “Getting married to a cousin also calls for a certain amount of adjustment. It is like any other marriage, compromise is a part of it,” says Thrity.


ADMAF supports Marriage Fund’s Thalassemia Health Awareness Campaign

May 15, 2010

Courtesy by: ameinfo.com

Within the framework of its commitment to the highest standards of social responsibility, the Abu Dhabi Music & Arts Foundation (ADMAF), announced today its support for the Marriage Fund in launching a health awareness campaign for Thalassemia.

Entitled “The Choice is Yours, for a UAE without Thalassemia”, the nation-wide campaign aims to educate the public about the disease and its prevention mechanisms. The campaign is also supported by the UAE Genetic Diseases Association.

Launched during a press conference held today at Emirates Palace, the campaign will feature informational leaflets and brochures distributed in educational and health institutions as well as offices all across the United Arab Emirates, in addition to advertisements and a media outreach element. As part of the campaign, the Marriage Fund with the support of ADMAF has also produced a film to provide information about the disease, its consequences and the steps that can be taken to prevent it.

The organisers and all supporting parties hope the campaign will help spread knowledge about the disease and contribute to the fight against Thalassemia in the wider UAE community.

H.E Hoda Al-Khamis Kanoo, ADMAF Founder, commented: “Our partnership with the Marriage Fund is rooted in ADMAF’s determination to reach out to the community. Our year-round community initiatives and the strong community program we implement has allowed us to enhance access to the arts for different groups of people from across the seven Emirates and touch the lives of disadvantaged groups through art.

It gives us great pleasure to support one of our valuable partners in its efforts to fight against a grave health risk in our society and requires great attention from us. Our involvement in this project reflects our commitment to continue expanding our collaboration with the UAE civil society.”

A committee for the first health campaign will be formed to carry out the instructions of H.E. Dr. Maitha Salem Al Shamsi, Minister of State and chairperson of the board of directors of the Marriage Fund. The committee will coordinate with all parties and ensure the completion of work according to agreed schedules and plans.

Thalassemia, a genetic blood disorder, is a serious public health issue in the UAE. According to some estimates, one in twelve people in the UAE are Thalassemia carriers. The disease, which often manifests itself in the form of anaemia due to low levels of red blood cells and haemoglobin, can be prevented through simple premarital tests.

The cooperation between the Marriage Fund and the Abu Dhabi Music & Arts Foundation started with the Abu Dhabi Festival 2010. In the lead up to the Festival and as part of its rich community program, ADMAF partnered with a vast network of civil society organisations, including the Marriage Fund, as a reflection of its commitment to embed the arts in the heart of the Emirates.

As title supporter of this campaign, ADMAF reaffirms its commitment to supporting its local community and to use the arts to communicate a powerful message to the society. The Abu Dhabi Music & Arts Foundation has since its launch been a strong advocate and supporter of many social and arts initiatives supporting the local community as well as the international arts community.


Official calls for premarital medical test

March 4, 2010

Courtesy by: arabnews.com

It called for the criminalization of marriages in which premarital medical checks are not carried out and the Ministry of Justice’s endorsement is not obtained.

The Health Affairs Department made the statement after discovering a number of potential couples carry genetic or communicable diseases, Al-Madinah newspaper reported.

“Health officials discovered that 1,801 persons were unfit for marriage out of a total of 92,149 people who underwent medical checkups over the past five years,” said Saeed Al-Zahrani, spokesman for the Health Affairs Department in Taif.

Of those tested, four were HIV-positive, 931 carried sickle cell anemia genes, 17 carried the actual sickle cell disease, 307 were either carriers or ill with thalassemia, and 542 were carriers of hepatitis B or C.

Al-Zahrani called on would-be couples not to neglect the checks, adding that 34 people went ahead with their marriages even though checkups showed they suffered from genetic diseases.

He said such people are jeopardizing the health of their future children and subsequent descendants.

Sheikh Abdul Mohsen Al-Obeikan, adviser at the Royal Court, also called on punishing marriage registrars who ignore premarital checkups when conducting marriages.

He added that there is a committee at the Justice Department to monitor marriage officials who register marriages without completing necessary formalities.

“An official who conducts a marriage without fulfilling regulations is responsible for the damages his act might cause to society,” said Al-Obeikan.


Drive against cousin marriages

February 13, 2010

Courtesy by: thenews.com.pk

The Seeds of Education, Policy & Legal Awareness Association has launched an awareness drive “Save a life, Save a Generation” to control cousin marriages which can pose health risks. In this regard, the NGO also officially launched a website (www.seplaa.com) during a press conference here at Lahore Press Club. Speaking on the occasion, Ammara Farooq Malik, the President of SEPLAA said, “At least 10 per cent of Pakistan’s population or one in every 10 people is a thalassemia minor carrier. At this estimated rate, the number of thalassemia cases will be doubled to over 200,000 in the next 10 years.”


Parents arrested for marriage of 12-yr-old thalassemic boy

June 4, 2009

Courtesy: indopia.in

Krishnagar (WB), May 31 An effort to conduct a marriage for their son suffering from thalassemia led to the arrest of a couple in West Bengal Nadia district who were under the belief that by doing so the 12-year-old boy would be cured of the disease.
Ashida and Shafi Mondal, were sent to judicial custody of 14 days yesterday for conducting the marriage of Majbul Mondal, a class VI student, with another minor in Mandiar village in Chapra area last week, SP H K Kusumakar today said.

However, both the families had reached an understanding that only after the boy becomes an adult, the girl would go to his house.

Majbul was being treated at Nilratan Sarkar Medical College and Hospital in Kolkata.

Soon after the wedding, the boy maternal uncle Sadikul Mollah took the initiative and lodged a complaint at a local police station.

Alleging that Majbul was unwilling to marry and wanted to continue his studies, Mollah said his parents compelled him to marry under the belief that after marriage he would live long.

The girl father Rafique Gazi of South 24 Parganas district alleged that he was told that the boy disease has been cured.


%d bloggers like this: