Notes: 6th National Thalassemia Conference & Workshops

December 25, 2009

6th National Thalassemia Conference & Workshops
17th – 19th December 2009
Lahore

Day 1: Conference Inauguration – Pearl Continental Hotel, Lahore

Ceremony started with Tilawat-e-Quran at 4 pm, Mr. Hussain Jafri, Secretary General TFP Punjab Chapter gave Welcome Address, and Dr. Yasmeen Rashid Secretary General TFP gave introduction of TFP.
TFP was established in 2004, Thalassemia patients registered with TFP are 25000, 39 NGOs working with TFP till date.

Prevention program being designed and developed by the help of WHO.

More than 15 billion are being subjected for the prevention by Punjab Government.

Mr. Iqbal, TFP Exec. Comm. Member being called to let us know the feedback of a Thalassemic parent, Dr. Jovaria Manna, Chairperson, Medical Advisory Board briefed us about scientific sessions and workshops of the next two days.

Dr. Jovaria informed us about Uniform Protocol, book on iron chelation therapy guideline which she has edited and being distributed all over Pakistan.

Mr. Iqbal told us about his blood bank and Thalassemia center, which is in Karachi and working successfully.

Address by Guest of honor Prof. Majeed Chaudhry, Principal, FJMC & Prof. Humayun Maqsood, Principal, FMCMD.

Both of them appreciated TFP’s work and event and and promised to support conference by all means.

Lt. Gen (R) Moin-ud-din Haider, President TFP thanked all for attending, requested for moral and monetary support for TFP and societies, told us about government being concerned in Thalassemia issue these days and gave shields to the mentioned below patients on their achievements.

1) Ayesha Murtuza from Abbotabad – LLB
2) Laiba Mukhtar from Lahore – 3rd position in Inter & 1st in I.COM
3) Master Abdul Samad – 5th passed Hafiz-e-Quran
4) Mujtaba Shareef – Hafiz-e-Quran
5) Miss. Atiya Kamran from Karachi – Inter pass, married
6) Mr. Ejaz Haider from Karachi – Volunteer for Fatimid
7) Ameen Tipu – Earning, married & have two kids
8) Usman – Hafiz-e-Quran

– End of day 1 –

Day 2: Patient Safety Awareness Workshop in Collaboration with World Health Organization – Fatima Memorial College of Medicine & Dentistry, Lahore

Started at 9:30 am with Tilawat-e-Quran, Dr. Yasmeen Rashid gave briefing over the workshop objectives; workshop was conducted by WHO on their World Alliance Of Patient Safety.

She briefed about iron chelation, transfusion, screening, hepatitis, aids, etc.

She even requested the NGOs to care about screening, cleaning and hygiene.

Later on Mr. Hussain Jafri briefed us about World Alliance of Patient Safety program.

WHO launched this program in October 2004.

Programs started under World Alliance:
1) Patients for patient safety
2) Patient safety research
3) WHO patient safety campaigns
4) Education and training
5) Implementing change

You can read about IAPO – International Alliance of Patients Organization at their website: IAPO

After Mr. Hussain, Dr. Jovaria came on dice to give us guidance over Patients Safety, she told us a patient should be aware of everything, he should ask the nurse while getting transfuse about screening, blood bag details, make sure that blood belongs to him, patient should get vaccination done, she even advice to get splenotomy done by good doctor not by any general surgeon.

After Dr. Jovaria, Question and Answer session was conducted, followed by panel-list of three doctors, three society member and three patients.

I was given the chance to be among the three patients, was given chance to brief over my activities and Thalassemia.com.pk, which got appreciated by all the people attending.

– End of day 2 –

Day 3: Prevention & Treatment of Hepatitis B & C of Patients Receiving Multiple Blood Transfusions – Fatima Jinnah Medical College, Lahore

Day 3rd was a bit hard to manage, as there were two things going on side by side at the same timings, one side conference over Hepatitis, other side scientific sessions over exjade, prevention & genetic counseling.

Not much new was being told, but there was a session which I wanted to attend badly and I have made notes of it, sharing it with you

Management of Pregnancy in Thalassemia Major – Dr. Yasmeen Rashid:

Patient who want to start new family should work hard to get her ferritin as low as 500, and must maintain her hemoglobin at 10 – 11 gram.

Pre Pregnancy Counseling:
Iron chelation is discontinued for 9 months

Pre Pregnancy Evaluation:
Cardiac, Liver, Vessels, Pancreas, Viral Infection, Iron Status – all things should be monitored closely.

During Pregnancy:
1) Iron should be around 300 to 500 for better health of baby.
2) Hemoglobin should be maintained at 10 – 11 gram.
3) Low blood transfusion, small quantity every 10 to 15 days to give enough oxygen to the body.
4) Vital signs should be monitored during transfusion.
5) Discontinue iron chelation.
6) Continuous check on ferritin level.
7) Cardiac monitoring every 3 months.
8) Endocrine function, oral glucose test should be done
9) Last but not the least, Best doctors!

Effects on the fetus if anything is wrong:
1) Fetal Hypoxia
2) IUGR
3) Premature Labor
4) Fetal Demise

Delivery:
One should wait for normal delivery to happen, but as it takes lots of efforts/energy so the patient should be monitored closely for cardiac functions.

In case of IUGR or Fetal distress cesarean should be performed.

Iron Chelation should be started within the first week after delivery.

– End of day 3 –

Program Guide: Day 1 , Day 2 , Day 3 a , Day 3 b

Pictures: 6th National Thalassemia Conference & Workshops

Note: I have made notes of my interested topics only, but I have attended almost every session… If you want to know about anything kindly drop a comment I will try to respond as soon as possible… But to be frank there wasn’t much new knowledge to hear.

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A special Christmas wish comes true

December 24, 2009

Courtesy by: thesundaily.com

Resorts World Genting recently organised a special Fairytale Christmas Party for over 400 special children, their parents and minders themed, Your Christmas Wish Comes True, at the Genting International Convention Centre (GICC).

The special guests were from the National Autism Society of Malaysia, Thalassemia Society of University Hospital, Kachin Refugee Community Centre in Kuala Lumpur, Compassionate Home in Subang Jaya, Dengkil Orphanage in Dengkil, Prima Selayang Learning Centre in Batu Caves and St Ignatius Church in Petaling Jaya.

The children were treated to a hearty breakfast and presented with a Resorts World Genting T-shirts before they were taken to the outdoor theme park for some fun. Later, they were ushered to the GICC for the main event of the day.

The children were greeted by staff of Genting Malaysia Bhd’s public relations and communications department dressed in costumes of fairytale characters like Snow White, Beauty and the Beast and Cinderella. Others were dressed up as wizards, fairies and santarinas.

The characters were led by Fairy Godmother Puan Sri Cecilia Lim, wife of Genting chairman and chief executive officer Tan Sri Lim Kok Thay. Also present was Dwina Foo, wife of Genting executive vice-president Kevin Sim.

In his speech, senior vice-president of Genting’s public relations and communications department Datuk Anthony Yeo, said: “This event is a consolidated effort by the Resort’s employees. True to the theme of this party, we hope to cater to each and every child’s wish.

“Besides giving the children fond memories of this party, we hope they’ll also cherish the over RM38,000 worth of presents we’ve purchased for them from donations in cash and kind from our staff and the management.”

There were also performances by some of the special children, including singing Christmas carols.


Red Cross tests expectant mothers for thalassemia traits

December 24, 2009

Courtesy by: indianexpress.com

The Indian Red Cross Society (IRCS), Ahmedabad, has become the only centre in the western region to determine legal abortions if tests confirm that the expectant mother carries the dominant genetic strain of thalassemia and Sickle Cell Anaemia in her baby.

Thalassemia and sickle cell anaemia is present in certain communities only in Gujarat.

IRCS has started Polymerase Chain Reaction (PCR) tests to detect thalassemia and Sickle Cell Anaemia (SCA). From these tests, early diagnosis of expectant mothers can determine if the embryo is carrying the thalassemia or SCA genetic trait. If the embryo is found carrying these traits, the parents can approach their district civil hospital and with the consent of the civil surgeon, can opt for legal abortion.

“At present, nearly 10,000 people have thalassemia in Gujarat. One thousand thalassemia patients are expected to add up every year. IRCS along with the Gujarat Health Department had started SCA and Thalassemia screening five years ago, but there are certain cases where married couples carrying these traits have come to know about their genetic disorder only after the delivery of the first child. Early diagnosis will help these couple, if they are planning for a second child,” said IRCS Executive Director Prakash Parmar.

He added: “After we started the PCR test this year, 25 thalassemia minor married couples were tested, of them one had to undergo legal abortion, while the rest have delivered healthy children.”

Parmar said in case of SCA, five married couples were tested. Two had miscarriage, while three went for the tests. One case each was reported from Jambughoda Primary Health Centre (PHC) in Panchmahals, Sagbara PHC in Narmada and Devgadh Baria PHC in Dahod districts.

“Of these, only the cases from Devgadh Baria showed genetic traits of SCA and had to undergo abortion,” he added.

Parmar cited a case at Sabarkantha district where a thalassemia minor couple opted to take the advice of the village ‘panch’ after their first child died. The village panch guided them to carry out tests at IRCS.

He added: “IRCS has approached the state Health Department to carry out early tests for expectant mothers at Ahmedabad in case either of the parents is carrying the SCA or Thalassemia genetic trait. We have sent a proposal to the Health Department asking them to do early tests for expectant mothers at the Ahmedabad Civil Hospital,

V S Hospital, L G Hospital, Shardaben Hospital, ESIC Hospital and the Sola Civil Hospital.”


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.”


Persons with disabilities to receive MRF 2000 per month

December 24, 2009

Courtesy by: miadhu.com.mv

Majlis had adopted the “Persons with Disabilities Act” which had mandated the government to pay MRF 2000 per month.

The bill was adopted by consensus which had combined the “persons with disabilities act” by the government and “assistance for persons with disabilities act” by Vilifushi MP Riyaaz Rasheed. The bill had also included thalassemia patients as persons with disabilities.

According to the bill the allowance would be paid to all in the disabled people’s registry.

The bill had called to provide equal opportunities in government decision-making, to protect their human rights, special protection, health, and education, civil and individual rights which persons with disabilities are entitled to, without any discrimination.

The government is also providing MRF 2000 per month for all the people above the age of 65.


Couples urged to follow doctors’ pre-marital advice

December 24, 2009

Courtesy by: gulf-times.com
Those who intend to get married should follow their doctor’s instructions to avoid health problems, Pre-marital Screening Committee chairman Dr Ahmed Kamal Naji has said.

“This should be coupled with a sound diet system, physical exercise, observing weight, giving up smoking, decreasing intake of stimulants like tea, coffee, carbonated drinks and sugars for their negative effect on fertility and fetus growth,” he explained.

Dr Naji said couples should never take any medicines without consulting their doctors.
“Women should take folic acid before pregnancy to minimise any deformation to the fetal nervous tube. For women with some types of heart diseases, the case has to be stable before pregnancy for the sake of the mother’s life,” he advised.

He added that during pregnancy, the mother should have appropriate treatment which does not affect the foetus, especially medicines taken for thyroid gland, epilepsy, blood clotting, blood pressure and diabetes. “All these are necessary to avoid any hard and lengthy trouble in the future,” he stressed.

The national pre-marital check-up and counselling programme, which was launched recently, screens would-be couples for potential inherited infections or diseases they could give to their babies, especially in close-blood marriages.

Family marriages play a great role in the infection of inherited diseases caused by recessive inheritance, such as the sickle cell anemia and thalassemia.

Dr Naji said according to the type of the disease, avoidance possibilities can be discussed.

However, he said screening did not include tests that check fertility of any of the couples.

A statement issued recently by the pre-marital screening committee has emphasised that it did not mean that marriages outside the family will guarantee that babies will be free of inherited diseases or even recessive inherited diseases.

“That is why it is important to conduct certain tests to determine if the person is carrying the disease.

Therefore, pre-marital screening is important for relative and non-relative couples,” it says.

The statement explains that the potential infection of congenital diseases among couples of family relationships is higher.

“The closer the relation, the higher is the infection as every individual, regardless of age or health condition, has about 5 -10 defective genes which do not cause any disease for the person carrying them, as he possesses similar genes that are disinfected.”

“When the couple carrying infected genes get married, their children might receive double dose of those genes, that is to say, each of the father and mother gives infected genes. This causes health problems according to the type of the infected gene.”

The Supreme Council of Health has divided the diseases to be screened for into two categories: contagious and inherited diseases.

The purpose of including contagious diseases such as hepatitis B and C, and HIV/Aids is to avoid some of them through treatment or vaccination, or else to warn the other party against potential infection.

Other tests in the premarital screening includes haemoglobin abnormalities (thalassemia and sickle cell anemia), hemophilia (A and B) and syphilis.

“Many of the inherited diseases have no cure, some are difficult to treat and their treatment might be very costly and might require some advice or counselling in addition to other lengthy procedures,” Dr Naji said.

He added that premarital screening has become an appropriate, effective and less expensive tool to combat and prevent inherited diseases, adding that it implied great benefits for the whole society as it protects against inherited diseases which cost much to be cured or treated.


Genetic and bio-technology conference held

December 24, 2009

Courtesy by: gulfnews.com

A large population of the UAE suffers from genetic disorders, including common ailments like diabetes, high blood pressure and thalassemia, which affect one in 12 people in the country

Dubai: The first genetic and bio-technology conference opened here on Monday with experts warning that the world is being challenged today by serious diseases and viruses that threaten our communities.

The event is organised by the UAE Genetic Diseases Association, in partnership with Yamaguchi University, Japan, Zayed University and DuBiotech.

“This event is all about inspiring students to think creatively about science and society, and to see themselves as part of a global community of practitioners working in similar fields,” said Dr. Michael Allen, Dean of the College of Arts and Sciences at Zayed University.

He said genetics and biotechnology is still a burgeoning field in the UAE.

A large population of the UAE suffers from genetic disorders, including common ailments like diabetes, high blood pressure and thalassemia, which affect one in 12 people in the country.

Dr Sulaiman Al Jassim, Vice-President of Zayed University, said the conference will help raise awareness on prevention and treatment methods of these diseases.

Graduate and post graduate students from the Zayed University, Higher College of Technology and Manipal University are taking part in the day-long conference.

Common genetic disorders in UAE

  • Diabetes
  • High blood pressure
  • Obesity
  • Birth Defects
  • Cancer, such as breast cancer
  • Leukaemia (1 in 12 in UAE has this)
  • Thalassemia
  • Alpha Thalassemia
  • Sickle-cell anaemia
  • G6PD (not enough of enzyme glucose 6 phosphate dehydrogenase)

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