Camp brings out a lot of love

Courtesy by: visayandailystar.com

A 13-year-old boy suffering from t halassemia says his parents are missing.

When John Vincent Panolino of Barangay Bata, Bacolod City , was 2 years old his parents fought, left for Manila and never came back. The boy was left in the care of his maternal grandmother, Adelaida Panolino.

The 60-year-old grandmother who sells food to passengers at the Ceres Bus North Terminal in Bacolod City said the boy has to undergo blood transfusion often, and she can barely make ends meet.

She said John Vincent was in fourth grade when thalassemia, a blood disorder that causes the body to produce less hemoglobin, caused him to quit school.

Low levels of hemoglobin may cause anemia, an illness that makes one feel weak and tired. Severe cases of anemia may damage organs and result in death.

John Vincent, who is yellow and pale, is often weak and lacks the energy to do much, but yesterday his grandmother said he appeared to be a different child.

“He is happy, he is running around with friends and dancing,” she said.

John Vincent was one of 30 children with cancer and other serious illnesses, and children who have parents with cancer who joined the third Suntown Camp at the Maryshore retreat house in Talisay City .

Yesterday, at the last day of the four-day annual camp, the children put on display the art work they made, some of which they sold.

The children’s artwork included pottery, wind chimes and quilts.

This year the camp’s theme was “Life in Color”, where art was used as a means for them to open up and express themselves, Suntown Camp president Millie Kilayko said.

Cielito Narvasa, a volunteer from the Children International Summer Villages in Manila , led the “Patchwork of Dreams Quilt Making Session” where the children painted their dreams, wishes, and their ideas of life and happiness, using non-toxic paint.

Narvasa said she was so happy to have joined the camp and see the selflessness of the people running it. It is more than just the money they donate to the camp, they put in their time and just give and give of themselves, she said.

“You could feel the positive vibration in the air,” she said.

Lilibeth Cordova, who has done a study on   Art Therapy   as a Way of Understanding Conflict    and completed a Masters Degree in Arts in Conflict and Reconciliation, led the children in working with clay to make something that is uniquely theirs, and in using recycled materials    like discarded keys and beads to make wind chimes.

“It is believed that doing art helps people, especially children to express themselves. It also takes their mind off their aches and pains because they become so engrossed working on their masterpieces,” Cordova said.

On Saturday, the children were also treated to their very-own carnival complete with all the fun that comes with it and MassKara Festival dance performances.

The children were paired off with volunteer parents as they laughed, played, danced and sang away.

John Vincent sang “May Bukas Pa” and charmed his camp father Waldo Flores, PNOC Development and Management Corp. chairman, who stayed with him throughout the carnival festivities.

Flores promised to help John Vincent undergo a slenectomy, a surgery to remove a diseased or damaged spleen, which he badly needs, Dr. Ceres Baldevia, one of the camp volunteers, said.

Waldo did things with the boy he never did with his own children, his wife Chona, said.

Another volunteer camp parent was Brenda Heffron, a member of Assumption College Class ‘65 that throws a party for the children at every camp. She was partnered off with a rambunctious 8-year-old Azrian Gabriel Anatalio of Talisay City .

Heffron, who has joined all three Suntown Camps, said it has been a wonderful experience.

“Suntown has taught me a lot, it reminds one not to take things for granted, and that, no matter what we go through we should take time to smile and appreciate the simple things in life,” she said.

“I look forward to the camp ever year,” she said.

And it appears it was not just Heffron who felt the connection with the camp, Azrian who has acute lymphocytic leukemia, did too.

In his post camp evaluation sheet under the question what did he like most about the camp, he drew stick figures of big people and small people holding hands.

Manila businessman Joey Duarte, who acted as camp dad to Rena Jean Manlapaz, a 10-year-old from Hinigaran town who suffers from bone cancer and has had one leg amputated, said if the world was filled with people like the children and the volunteers at the camp it would be a “beautiful and different world.”

He said the camp has changed the life of his family forever and he is thankful for having been a part of it.

Rena, who has been a shy withdrawn child who barely talks, got up to the courage to dance and sing at the closing rites of the camp for the first time.

Many other stories of bonding and love between the children, the camp staff and other volunteers came out of this year’s camp.

Camp volunteer staff member Aurora dela Paz said, all those at the camp learned something from each other, there was a lot of love that went around.

“We have painted each others’ lives with colors,” she said.

This year’s camp directors were Martin Chua and Nikki Cajili.*CPG

Thalassaemia website ‘will help educate youngsters

Courtesy by: gulfnews.com

A website on the disease was launched on Sunday in a high-profile manner to send the message to a larger number of people.

Dubai Health authorities in the emirate are reaching out to the younger generation in an attempt to stem the growing prevalence of thalassaemia, a deadly blood disorder among UAE residents, doctors said.

A website on the disease was launched on Sunday in a high-profile manner to send the message to a larger number of people. Shaikh Majid Bin Mohammad Bin Rashid Al Maktoum, Chairman of the Dubai Culture, clicked a laptop keyboard key to launch the dedicated website, www.thalassemia-dubai.com

“It will attract teenagers who nowadays are on Facebook (and other social network sites),” said Dr Khawla Bel Houl, director of the Thalassaemia Centre.

The blood disorder affects one in 12 people in the UAE, with Emiratis and Pakistanis, being affected the most, according to the number of patients treated at the Centre.

The director said the authorities are proposing that university students should also be screened, expanding the checks which presently are restricted to couples who are planning marriage.

Dr Khawla said that while there is awareness of the disease among the younger generation, there is barely any compliance (on screening or testing). A thalassaemia test is free for Emiratis and costs about Dh50 for expatriates. The screening takes five minutes and is painless.

Healthcare professionals will benefit from having a localised resource containing international standard information, they can also e-mail for expert advice, she added.

The website will add to the centre’s patient communication system that uses SMS to alert its patients to treatment changes, appointments, and its activities.

“The DHA (Dubai Health Authority) is dedicated to ensure we reduce the prevalence of thalassaemia in our society and we have given high priority to measures such as pre-marital testing,” said Qadi Saeed Al Murooshid, director-general of the Authority.

He said it was important to reach out to the public and provide information on diagnosis and treatment options. “We want the public and health care providers to have a forum to interact and this website provides such an opportunity,” he said.

Dr Khawla said education is the key part of chronic disease management. She said there were lapses earlier in the pre-marital screening, but it is now mandatory in all the emirates.

The Thalassaemia Centre treats 450 patients and is working at full capacity, said the director. She said most of the patients require blood transfusions every two or four weeks.

Disease: What is thalassaemia?

The disease reduces the number of normal blood cells in the body. The lack of red blood cells prevents the normal flow of oxygen around the body. The symptoms are fatigue, weakness, shortness of breath, racing heart and paleness of skin.

For more information on thalassemia, log on to www.thalassemia-dubai.com

Thalassemia Screening for Varsity Admission Mooted

DUBAI – The Thalassemia Centre in Dubai is pushing for legislation to make thalassemia screening programmes compulsory for those seeking admission to universities, a move aimed at tackling the most prevalent genetic disorder in the country.

The UAE’s only specialised centre that offers comprehensive tools for prevention, diagnosis and management of thalassemia has also put forward a suggestion to introduce compulsory community hours for university students to work with its officials and patients so that the former understand the blood disorder better and volunteer for getting screened.

One in 12 people in the UAE carry the gene for thalassemia, a blood disorder that reduces the number of red blood cells in the body.

The government has already made pre-marital tests for couples mandatory to help assess the chance of a couple having a thalassemic child.

Dr Khawla Belhoul, director of the Thalassemia Centre, however, pointed out that pre-marital tests are usually done at a very late stage and many couples do not want to back out from having a marriage even after knowing their carrier status.

“It (pre-marital testing) is not enough. It usually comes too late,” said Dr Belhoul.

“I think everybody should screen their kid. Your kid should know about himself before he gets involved (in a relation). The possibility of one backing out is much higher if he knows the condition before getting engaged or involved in a relation,” she told reporters on the sidelines of the launch of the centre’s websitewww.thalassemiacentre.ae or www.thalassemia-dubai.com on Sunday.

Though the proposals are to mandate thalassemia screening certificate at the time of university admission, Dr Belhoul said universities could at least impose it any time according to their convenience.

“They (students) don’t have to submit whether they are positive or negative or they are carriers. But they should know their status. What matters is that they are tested.”

Pointing out that students doing volunteer social work with the centre could have better knowledge about the disease, she said universities should also introduce community hours to be spent with the centre and its patients.

Since over 80 per cent of the affected patients are teenagers, she said, the centre is trying out modern electronic ways to get across the messages of prevention and early detection to the young generation.

The website that was launched by Shaikh Majid bin Mohammed bin Rashid Al Maktoum, Chairman of Dubai Culture and Arts Authority, is an important step towards this.

The website allows users to interact with each other and to leave comments and suggestions for the centre’s staff.

“When we talk to teenagers, we have to talk in their language. And that is what we are working on now. We are doing a lot on the internet…we are working on facebook and twitter,” said Dr Belhoul.

The Director-General of Dubai Health Authority (DHA), Qadhi Saeed Al Murooshid, who accompanied Shaikh Majid on a tour of the Thalassemia Centre, Dubai Cord Blood Centre and Joslin Diabetes Centre, said the authority was keen on providing easily accessible interactive forums which have information on diseases and their management, as it was crucial to further develop its patient communication systems.

The website will add to the centre’s already well-established patient communication system that uses SMS to alert its patients to treatment changes, appointments and the centre’s activities.

Majid bin Mohammed launches latest Thalassemia website

Courtesy by: ameinfo.com

His Highness Sheikh Majid bin Mohammed bin Rashid Al Maktoum, Chairman of Dubai Culture and Arts Authority, today launched a completely dedicated Thalassemia website at the Thalassemia Center of the Dubai Health Authority.

His Highness praised the efforts of the Dubai Health Authority (DHA) and its commitment to provide internationally recognized levels of care in chronic disease management. During his visit to the Thalassemia Center, he also visited the Dubai Cord Blood and Research Center and the Joslin Diabetes Center.

The team at Dubai’s only dedicated Thalassemia Center in Al Wasl Hospital has designed the site with separate areas for the public and healthcare professionals, in Arabic and English, to help boost education of the disease, and improve communication between itself and the center’s users.

His Excellency Qadhi Saeed Al Murooshid, Director General of the Dubai Health Authority, said:

“The DHA is dedicated to ensure that we reduce the prevalence of Thalassemia in our society and we have given high-priority to measures such as pre-marital testing. While we have implemented healthcare policies to tackle this disease, we realize that it is important to reach out to the public and provide them with up-to-date information on facts, diagnosis and treatment options. Moreover, we want the public and healthcare providers to have a forum to interact with each other, and this website provides such an opportunity.”

Al Murooshid added, “The DHA is keen on providing such easily accessible interactive forums which have information on disease and disease management, as this is crucial to further develop our patient communication systems.”

The website allows users to interact with each other, and to leave comments and suggestions for the center’s staff.

“What we want to do is match the ideal international chronic care module released by WHO, and a website containing accurate up-to-date information on the disease for patients, the public and healthcare professionals, is part of that,” said Dr. Khawla Belhoul, Director of the Thalassemia Center.

Dr. Belhoul added, “The education of patients is a key part of chronic disease management, and the website offers an easily accessible and comprehensive way of doing this. We want to encourage people to use the site to gather information, ask questions, leave comments, and take part in forums where they can discuss issues with other sufferers.”

“Healthcare professionals will benefit from having a localised resource containing international standard information, they can also email us for expert advice,” she said.

The website will add to the center’s already well established patient communication system that uses SMS to alert its patients to treatment changes, appointments, and the center’s activities.

One in 12 people in the UAE carry the gene for thalassemia, a blood disorder that reduces the number of normal blood cells in the body, according to figures collated by the DHA.

If two carriers have children, the likelihood of each child developing the disease is 25%. The lack of red blood cells prevents the normal flow of oxygen around the body, which presents with similar symptoms to anemia.

Around 40% of the patients at the Thalassemia Center are Emiratis, another 40% are expatriates from Asia and Africa, while 20% are other Arab nationals.

Medical students to come together for conference

Courtesy by: gulfnews.com

As students, we often find ourselves complaining about our adult-dominated lives. The 4th UAE Medical Students’ Conference, to be held from November 14-16, is a refreshing opportunity for medical students struggling to carve out a niche of their own instead of finding shelter in someone else’s cubbyhole.

The conference is being hosted this year by the University of Sharjah, Faculty of Medicine and Health Sciences. The event is organised by the Emirates Medical Students’ Society in collaboration with the Dubai Medical College for Girls, the Ras Al Khaimah Medical and Health Sciences University, Gulf Medical College, Universal Empire Institute of Medical Sciences and the University of Sharjah.

The theme
In keeping with its theme ‘Today’s students, tomorrow’s doctors’, the conference will allow students to interact with each other and attend lectures by guest doctors and speakers from the US, UK, Australia and Japan.

An impressive line-up of events that include workshops — many of them run by students; health awareness campaigns such as information booths on Thalassemia prevention, breast cancer, autism and H1N1; a career and internship fair; a multimedia competition and leisure trips has been planned.

‘1.5m Thalassemics unaware of their condition’

Courtesy by: thenews.com.pk

Thalassemia is a painful disease and currently there are 1.5 million patients suffering from it who are completely unaware about it, said Mohammed Iqbal, president of the Iqbal Thalassemia Care Centre (KITCC) Trust on Saturday.

Addressing the inaugural ceremony of the KITCC Trust that saw a number of political figures coming forth with their support for the organisation, Iqbal further explained the illness to the audience. “There are two types of Thalassemia, minor and major. The minor one is a blood irregularity and doesn’t require any medicine but if two people having Thalassemia minor get married then their children may be born with Thalassemia major which is not curable and is a life long process of pain and misery for the family,” he explained.

“The disease spreads because of intermarriages and most of the victims are Baloch, Pathan, Memon and other such communities where intermarriages are common. As a result, the disease is carried from generation to generation,” he added.

S M Muneer, Patron-in-Chief of the KITCC Trust lamented how the government was always there when passing a bill but when it came to actually providing financial security to welfare organizations, it did not seem to have time. “We know that there are other more important issues for the government to deal with but health care is equally important, and needs concerted effort as it is teamwork and can’t be done in isolation,” he said.

Sindh Minister for Health Sindh, Dr Sagheer Ahmed, reiterated the same and added, “It’s high time we stop supporting a cause verbally and instead show that we actually aim to do something about it. We need the state to come forward as it’s a long-term process.” He also stressed the need to bring forth laws in which married couples would be asked to go for blood tests in order to avert the risk of Thalassemia.

In the end, Speaker Sindh Assembly and Acting Governor of Sindh, Nisar Ahmed Khuhro, said that the Sindh Assembly had passed a resolution in October 2009 according to which it would be mandatory for the youth to go through tests before marriage so that the disease could be investigated upon. Senator Abdul Haseeb Khan also spoke.

CordLife targets India as potential stem cell market

Courtesy by: samaylive.com

Kolkata: CordLife, one of the leading stem cell banking groups in the Asia Pacific region, is targeting expansion of its network in India and China, considering the huge birth rate in these two Asian nations, a top official said on Wednesday.

“We’re looking at India and China as two big markets in terms of our stem cell business in the Asia Pacific region – keeping in mind the huge birth rate in these two countries,” CordLife group chief executive Steven Fang told media persons Wednesday on the sidelines of a press conference here.

“We’re presently in talks with a large number of big government and private hospitals across India to tie up with them for stem cell therapy treatment.”

He said the company was growing at a rate of 70 percent in terms of its client base, and also registered 30 percent growth in its net profit last year.

“Once this stem cell therapy gets commercialised in this country, we’re sure there would be more growth in this particular healthcare sector,” Fang said.

CordLife operates Asia’s largest network of private cord blood banks with full processing and specialised storage facilities in Singapore, Hong Kong, Indonesia and India. It has a strong marketing presence throughout the Asia Pacific region.

The company set up its first storage facility in Kolkata’s adjoining diamond harbour area early this year. The unit has a present capacity of storing about 40,000 cord blood units with a potential to store as many as 150,000 cord blood units.

“The total size of India’s stem cell preservation market is about 15,000 units per annum and it’s growing at a rapid pace. The growth rate has been approximately 42-50 percent per year,” CordLife managing director Meghnath Roy Chowdhury said.

Cord blood has become a very common source of stem cells for transplantations. Permanent cures are possible for some diseases using stem cell therapies.

According to experts, this stem cell therapy can be used for treating various diseases like heart ailments, diabetes, skin trauma, certain cancers like leukaemia and breast cancer, and blood disorders like thalassemia major.

Cord blood, which is also called “placental blood”, is the blood remaining in the umbilical cord and placenta following birth and after the cord is cut. Cord blood is routinely discarded with the placenta and umbilical cord.

However, the cord blood, with its rich sources of blood stem cells, can be used to treat over 80 diseases.

Hundreds in farewell to ‘Don’

Moving tributes to Gunners fanatic who suffered from rare blood condition

HUNDREDS of well-wishers filled St Andrew’s Greek Orthodox Church in Kentish Town on Friday to pay tribute to a man known as “The Don”.

Costas Kontourou, who lived in Kentish Town, died recently, aged 48, in the Royal Free Hospital after a short battle with liver cancer.
He had been born with thalassemia, a rare inherited blood condition which prevented him from receiving full treatment.

A devoted Arsenal fan, Mr Kontourou was buried wearing a Robin van Persie Gunners shirt – his coffin was cloaked in a club flag signed by the players.

Around 600 friends and family attended, some coming from as far as Australia and New York, with many wearing official red Arsenal ties signed with messages of support.

Speaking at the service, Mr Kontourou’s nephew Louie said: “People can’t live forever, but I thought you would be okay. I thought they would find a cure for you. Everyone loved and cared for you and we used to play the Wii together and remember we used to play the golf and you used to beat me every time. I will always remember all the good memories and they will always stay with the family and me – so I wish you the best and I will always love you. You will always be my uncle and in my heart.”

Mr Kontourou was born in 1961 and lived in Wilmot Place, off Rochester Square. He went to Holy Trinity and St Silas school in Kentish Town and later Acland Burghley in Tufnell Park.

His first job was with Leonard Lyle & Co, then the foremost suppliers of legal clothing to barristers working at the Old Bailey.

In a recent interview, he said: “I must have seen more judges’ underpants than was good for me by the time I was 18.” He went on to work with his family’s clothing business and later set up his own travel company.

Mr Kontourou was diagnosed with thalassemia aged six months and became one of the founding members of the UK Thalassemia Society in 1976.

He campaigned to raise awareness of the condition, which is prevalent in Mediterranean families, throughout his life.

Society co-ordinator Elaine Miller said: “Costas’s greatest talent was a talent for friendship. The UK Thalassemia Society office has received countless messages in the past two weeks from people who knew and loved Costas.”

Mr Kontourou’s first love was for Arsenal Football Club – his friends said he knew many of the players personally and that Gunners captain Cesc Fabregas put his hand to his chest in memory of Mr Kontourou after scoring a goal in the Champions League last month.

An Arsenal spokeswoman said: “As a club we send out sincere condolences to Costas’s family at this very sad time.”

Patsy Andrews, who lived next door to Mr Kontourou when they were children, recalled a fun-packed childhood, full of pranks and mischief. “He was a beacon of light and a selfless true gent,” she added.

Mr Kontourou is survived by his sister Georgina and his mother Myriamthi.

SCB haematology wing acquires lab

CUTTACK: Diagnosis and detection of blood disorders has taken a quantum jump in the State with the Clinical Haematology wing of the SCB Medical College and Hospital acquiring a state-of-the-art laboratory to conduct complicated tests.

The advanced facility is equipped with a fully automated capillary zone electrophoresis machine, fully automated five part cell counter and a fully automated coagulometer besides other instruments. It is all set to acquire a flow cytometer to carry out advanced tests for detection of critical blood diseases like cancer. It would be installed by the end of November.

The haematological laboratory billed to be the only of its kind facility in the State and able to conduct all kinds of examinations is being set up at an investment of Rs 1 crore by the State Health Department.

Head of Clinical Haematology Dr RK Jena said the facility would speed up tests and save people from the problems of having to send the samples outside the State for accurate diagnosis of complicated ailments.

The electropherosis machine would enable testing of thalassemia, sickle cell anemia, multiple myloma and other types of blood cancer with accuracy of almost 100 percent. Presently, samples were sent outside or done manually which had high error possibilities. The cell counter would undertake blood cell examination while coagulometer would detect bleeding disorders like haemophilia. The soon-to-be-installed flow cytometer would be used to diagnose blood cancers.

Blood diseases like sickle cell anemia, thalassemia are highly prevalent in Orissa while more than 70 percent of the population is estimated to be suffering from anemia. Besides, cancers of the blood are also on an alarming rise.

According to Dr Jena, the costs of the sophisticated tests would come down drastically. Sickle cell anemia, thalassemia tests would be done at around Rs 250 against Rs 1000 now.

Piece of glass in another vial

Courtesy by: dailymirror.lk

A ward in the Thalassemia Centre at the Teaching Hospital in Kurunegala became the latest location where a vial containing an anti-biotic drug was found with a piece of glass.

When the medical staff got ready to administer the drug on the patients of the ward, the detection was made.

The nurse of the ward who detected the piece of glass in a vial containing Ampicillin had handed it over to the Chief Medical Officer of the Thalassemia Centre, Paediatrician Dr. Dayananda Bandara.

Dr. Bandara said that it was a very serious situation as the minute pieces of glass that could be present in the liquid drug could cause severe damage if it enters the blood stream and affect the heart, eyes, kidneys and the liver.

The possible coagulation blood around such a glass particle may block arteries and create severe heart conditions too, he said.

Dr. Bandara said that the Ministry of Health has been risking the lives of helpless patients by importing such low quality drugs. It is learnt that the drug was imported from India.