A disease for life

December 24, 2009

Courtesy by: 7days.ae

Nichola Jones finds out about the dangers of a chronic disease during a visit to a thalassemia centre in Dubai

With a look of intense concent-ration on his face, ten-year-old Ali Sahun is a typical school-boy, desperate to beat the computer in a tense football video game.

But life is not completely normal for the youngster as blood is being pum-ped into his body through a drip attached to him while he plays – a routine he will go through every three weeks for the rest of his life.

“He’s been having them since he was three months old, he’s used to it now,” explains Ali’s mum Naseem. “Sometimes he gets tired and restless a few days before he’s due for the blood but he doesn’t let it affect him.”

Ali was diagnosed with the hered-itary blood disorder thalassemia, which restricts hemoglobin production, when he was a baby and is among the one in 12 people in the UAE either infected by or carrying the disease.

He now attends Al Wasl Hospital’s Thalassemia Outreach Centre – the only of its kind in the Gulf and the first to be opened in the Middle East. It not only offers medical treatment but also vital counselling and support as sufferers come to terms with their situation.

Naseem says: “I am a carrier and after I was pregnant my husband was tested and he was also a carrier so we knew Ali would have it. Sometimes Ali asks why he doesn’t have a brother or sister and we try to explain why – it would have been a big risk.”

It is possible to be a carrier without suffering from the illness but there is a 25 per cent chance of the disease being passed to offspring if both the parents are carriers.

Centre coordinator Dr Essam Dohair says premarital tests for the blood disorder are now compulsory for UAE nationals and expats and that fiancés who ignore medical advice to separate could inflict a lifetime of gruelling treatment, as well as the risk of organ failure and premature death, on their future children.
“Today, I met a couple who are both carriers.

When we are talking about the possible options, we advise them to go their separate ways,” Dohair said. “If it’s an arranged marriage, it is easier because they don’t know each other, there is no love story. We advise them to find another partner who is not a carrier – why not?”

In order to register a marriage in the UAE couples must present a thalassemia screening certificate as part of a nationwide campaign to fight the illness.

Sufferers must have a blood transfusion every three weeks for the rest of their lives and face having a drip inserted into their stomachs for 12 hours every day to counteract rising iron levels in the body. Haemoglobin transports oxygen to the body’s organs but thalassemia sufferers don’t have enough.

If it is not managed properly, the condition can cause excessive bone growth, hormone defects and, ultimately, death.

The only way it can be cured is through a bone marrow transplant or stem cell treatment – neither of which are available in the UAE – and both are extremely expensive.

Dohair says many couples ignore advice to scrap plans to tie the knot and find new partners if they are found to be carrying the chronic disease in a bid to tackle the illness.

“Before they become parents they must know they are carriers so they can avoid having this diseased child,” warned Dohair.

“This is a chronic disease for life, it’s not something that you can ignore.”

Dohair advises people to get screened as early as possible to avoid heartache in the future.

“We have couples who come here for screening a few days before the wedding party.

They have booked the hotel, all the arrangements have been made.

The advice is the same – do not get married. Almost all of them refuse. If a girl is screened earlier, it’s better so she will know before she falls in love.”
The disease is also taking its toll on blood stocks.

Banks are desperate for donations as up to 50 per cent of Dubai’s blood supply is used by thalassemia patients every year.

The centre has 750 patients on its books – 450 of which need regular transfusions, using up to 20,000 units of blood per year.

Dohair said “This is our second problem. We are desperate for blood donations here, not just for these patients but for Dubai in general.”

Lubna’s Story
Media studies student Lubna Iqbal plans to make a documentary about thalassemia to break the taboo of the illness she and her family will live with forever.

The 20-year-old Pakistani says: “I was three months old when they found out I had it. I had a fever and they brought me to hospital, then I was diagnosed. I have three brothers and sisters. I am the fourth child and the one with thalassemia.

“People really need to know more about it – most people have no clue. When I was at school and now at university, people are always asking me about it.

“They are very supportive and I tell them they should be screened.

“When I was 18, I was going to have a bone marrow transplant in Pakistan.

Both of my sisters were exact matches, which was very lucky.

But at the last minute, the doctors and my parents decided it was too big a risk to take, there are too many complications.

“My brother lives in the UK and is married to my cousin and they are both carriers. When his wife was pregnant, they had a test on the baby and found it had thalassemia. They were advised to have an abortion so they did. They now have other children who are fine.

“It’s better to get tested. I would like to have a family one day and as long as my husband is not a carrier, then I can. Thalassemia doesn’t stop you doing the things you want to do.”

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The Dine-Up 2009

December 15, 2009

Courtesy by: Karachi.metblogs.com

On the 9th of December 2009  Google and CIO Pakistan once again organized yet another amazing event, a Dine up with Dell where around 65 of the key blogger from Karachi were brought together under one roof to talk, discuss and play as silly as we want but only to address and discuss much saner and slightly more serious issues.

The event was held a few days ahead from the first anniversary of the first ever large scale bloggers meetup in Karachi, and although the event was announced almost only 48 hours before but like Farhan says in his blog, it is really hard to miss any event which CIO and Google organizes, so even on such short notice a lot (almost around 65) key bloggers showed up at the event. Also present at the event were Naveen Naqvi, poppy Agha and Sania Saeed.

At the event we discussed a lot of things including “take back the tech” campaign to the pros and cons of the new media revolution and how we can further benefit form the internet communication technology. The event also supported A noble cause for Thalassemia Awareness (http://thalassemia.com.pk/) , all bloggers were urged to place a link or add a badge or ribbon to help and support the cause. You can find more details of the event at Farhan’s blog here

Such events help address the issues bloggers and people associated with the new media technology faces on a day to day basis and provide a platform to discuss and realize our responsibility and our role in reshaping and better representing our country in the world.


New dates for National Thalassaemia Conference

December 10, 2009

New dates for National Thalassaemia Conference have been announced by Thalassaemia Federation of Pakistan (TFP).

6th National Thalassaemia Conference and Workshops will now be organized from 17th to 19th of Dec, 2009 at Fatima Memorial College of Medicine and Dentistry, Shadman Colony, Lahore.

For further info about the conference, please contact TFP directly at their numbers: 042-5181549, 042-5181749.


6th National Thalassaemia Conference and Workshops

November 25, 2009

Thalassaemia Federation of Pakistan (TFP) is pleased to announce that the 6th National Thalassaemia Conference and Workshops will be organized from 12th to 13th of Dec, 2009 in Mirpur Azad Kashmir.

All TFP member societies, individuals and organizations are invited to participate in this conference.

In this regard, please revert to the following:

1) Federation will sponsor three individuals from each TFP member society and they will include 01 Patient, 01 Parent and 01 Representative of your society. It is requested to send those participants who have not previously attended the conference so that more and more people are provided the opportunity to participate in the conference. Deadline for conference registration is Dec 5, 2009.

2) Economy fare Train/Bus along with accommodation will be given by Federation.

3) TFP will provide accommodation on triple sharing basis (one room per society) for two nights.

4) TFP has decided to honor extraordinary Thalassaemic children. In this regard, please send us the name of one Thalassaemic child from your society, who have done exceptionally well in academic, sport or extracurricular activities by November 24, 2009. This record will be presented to a committee who will finalize the names of the children to be honored.

5) Federation also plans to publish a news letter which will be distributed in the conference and for that we request you to kindly email a write-up of your society’s activities since the last Thalassaemia conference in Karachi by 24th Nov, 2009.

6) Societies that have not submitted their TFP membership dues up to 2009, are requested to submit the dues before 24 Nov 2009. Please note that societies not paying their memberships dues by the given date will not be provided the above mentioned services.

7) Non members of TFP, kindly email or call TFP office for more information on how to attend the conference.

Details: tfp.org.pk


Celebrating 100 Bone Marrow Transplants

November 23, 2009
Celebrating 100 Bone Marrow Transplants - Tuesday, November 24, 2009

Celebrating 100 Bone Marrow Transplants - Tuesday, November 24, 2009


Italy allocates $10m for production of syringes

November 20, 2009

Courtesy by: thenews.com.pk

KARACHI: Italy has allocated $10 million for setting up a plant to locally produce self-destructive syringes under a joint venture between an Italian company and Pakistani counterpart from the private sector.

Ambassador Vincenzo Prati said this while speaking at a presentation made by the Pakistan Pharmaceutical Manufacturers Association (PPMA) here on Thursday.

He said Italy has converted its $100 million loan for Pakistan through debt swap sometime back and $10 million have been allocated from that amount for this project. He pointed out that an Italian manufacturer of self-destructive syringes has been identified and now his government is looking for Pakistani partner for this joint venture.

Responding to the demand of the PPMA for arranging meetings of Pakistani pharmaceutical manufacturers and Italian pharmaceutical companies for joint ventures in technical fields, Prati said he was very willing to extend support in this regard.

“However, I need serious people from the PPMA, having concrete proposals for joint ventures in specific fields and they must first contact Italian companies and then let me know,” he added. He said low cost of production in Pakistan coupled with very high quality of Italian products would form the ideal joint ventures.

Prati said the Italian embassy will invite Italian Health Minister end of January or early February 2010 to visit Pakistan in reciprocation to the earlier visit of Pakistani Health Minister to Italy. He said a seminar could be held on “opportunities for joint ventures in pharmaceutical field in Pakistan” during the visit of the Italy’s minister.

He said large Italian pharma companies can come to Pakistan and three to four big projects in pharmaceutical fields can be discussed with Pakistani partners during that seminar. Prati said an Italian thalassemia physician is working in Pakistan to help local hospitals fight against this disease.

Earlier, Chairman of PPMA Zahid Saeed in his presentation urged the ambassador to help in joint ventures in various pharmaceutical fields including biotech facilities, active pharmaceutical ingredients (APIs) and clinical research organisation (CROs).

He said all the major multinational pharmaceutical companies from all over the world are operating in Pakistan except Italian companies. He said pharmaceutical business was growing at a rate of 21 per cent and there were bright prospects for Pak-Italy joint ventures in this field.


Policy dialogue on family planning

November 14, 2009

Courtesy by: thenews.com.pk

The Secretary, Population Welfare, Muhammad Siddiq Memon, has said that in order to make the Family Planning Policy a success, concrete measures such as pre-counselling of couples before marriage, HIV and Thalassemia tests have been taken up by the department.

He stated this while inaugurating the Policy Dialogue on “Paradigm Shift of Population Welfare Programme” at a local hotel Wednesday.

He pointed out that the Family Planning Programme did not mean to control population growth only but also to ensure family welfare besides proper growth and care of child and mother.

Siddiq Memon said that keeping in view the rapid changes and developments taking place, the youth has to play an important role in making the programme a success.

For this purpose, the department with the approval of the Sindh Government is launching a programme on family welfare for students of Higher Secondary classes.

Later, the participants of the policy dialogue meeting, after deliberations, presented their proposals for inclusion in the Policy Dialogue to be held in Islamabad to formulate a new policy on family planning.


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