Alhamdulillah FAiTh [Fight Against Thalassemia] is gaining its place in people’s life, heart, mind and now it secured its position in TIF [Thalassemia International Federation] Magazine 🙂
Do you carry thalassemia gene? The Union health ministry will soon find out. Recognizing the tremendous burden of thalassemia, the ministry has decided to launch a national programme to combat this genetic blood disorder.
In thalassemia patients, the bone marrow does not form normal red blood cells. Hence, the patient’s survival depends on repeated blood transfusions throughout life — once in every 2-4 weeks.
Union health secretary K Chandramouli told TOI that the urgency of such a national programme was unanimously accepted by state health ministers during a recent meeting in Hyderabad.
“The modalities of the programme will now be worked out in consultation with experts,” Chandramouli said. He added, “The programme will look at testing blood samples of adults before they marry. If two adults with the thalassemia gene marry, chances are very high of their baby being born with the disease. Since, majority can’t afford its treatment, we will soon start a pilot project.”
What took off as a class project for these six students of Wilson College is no more the same
It was a just a class project, with all its hesitations and disappointments, that turned big for these 20-year-olds. For they helped spread awareness about thalassemia, a blood-related disorder, among 600 people in just two days.
The six students of Wilson College had picked up the disorder for their final-year contemporary issues project. Nehal Tiwari, one of them, says, “We wanted to target youngsters who would probably be thinking of starting a family. We contacted five-six call centres that usually have a young workforce and sought permission to meet workers. We were denied permission.” Adds Manish Usapkar, “We were shoved off. One man in Thane said we should not teach wrong stuff to youngsters. Some people think that thalassemia is a sexually-transmitted disease.”
Royce Noronha says, “We had prepared a streetplay on the issue, but when we enacted it at Marine Drive not even one passerby stopped to see that.” Adds Nisha Thomas, “Also, the word thalassemia itself is so new, that to just make the person aware about such a thing is challenging.”
But then, the campaign took off. A group member, Leron D’Souza, created a video and put it on YouTube and Facebook, which received over 800 hits. They did a two-day drive too, wherein they spoke to people at Bandra Bandstand, Marine Drive, Girgaon Chowpatty and the like. “At Bandstand, we went behind barricades and enclosures where couples sit and talked to them,” says Royce. “In fact, some people actually thought we are talking about AIDS and HIV… We would move around with flexes on our necks, saying things such as “Are you feeling fit and fine”. Or hang a mirror around our necks and say this person could be a thalassemia patient.”
Nehal says they realised they needed to attract people’s attention. Manish adds, “We would be asked questions such as is thalassemia a planet or some country. People do not have any idea what it is. Once there was a doctor couple at Marine Drive who did not know about the disorder; they thought they did but had no clue about it.”
Aparna Nair says they used to join people jogging at Marine Drive in the morning just to talk to them. “We orgnanised innovate games like dart at a suburban college where nobody would even stop and listen to us. People would come and play and then we could talk about thalassemia.”
Manish says they did not initially believe in the concept. The ‘moment’ came when the group took out some thalassemia-affected children to MacDonalds for a treat. “I was told that there will be affected people aged 12 to 21, but I could not find any 21-year-old. These people have stunted growth and perhaps they do not look their age. Yet I was stunned how normal they look,” says Nisha.
“Once I saw a patient who was having blood transfusion, which is the only way they can stay alive; and here he was eating Kurkure and watching TV. Instead of feeling pity, I felt I should give them a well-deserving life,” adds Aparna.
For the group, thalassemia is now a life-long cause. “We will keep coming back to this issue through the NGO ‘Think Foundation’ that fights for this cause, says Manish.
It was a dream-come-true for Meera, who suffers from Thalassemia but has a wishlist. Floating in like a princess, the five-year-old from Kalba had a day she, and all around her, would remember forever when she walked into Burj Khalia – the world’s tallest tower.
Treated like a true princess from her favourite fairy tale, Meera could fulfill her wish thanks to Make A Wish Foundation that takes care of children like her.
Surviving with regular blood transfusion since she was six months old, for which she is brought to Sharjah every three weeks, Meera will have lots to talk about over her visit to the world’s tallest tower.
In pain, most of the time, Meera had reasons to smile, laugh and be happy like the little princess in fairy tales and for once forget she would soon have to endure the blood transfusion procedure that could last up to seven hours at a time.
Her elated mother said: “Meera is the second child in our family. We have two other healthy kids, Mohammed aged 7 years and Mariya aged 4 years.”
Always wanting to be a Snow White or Cinderella, this trip to Dubai is special for Meera and her mother.
“She has a wide imagination. She is a very loving and caring kid. She is humble and she loves taking care of other kids, and she is very smart and intelligent. Despite her illness, she is very determined in such a young age to fight the disease and live a happy life. She is older than her age,” says her mother who is always there to take care of the little child.
“We surprised her at the hospital. She didn’t know that today she will live like a princess. A limousine picked her up, she wore a beautiful dress and crown. She distributed gifts to other kids at the Thalassemia Centre and she went atop Burj Khalifa, everything making her so happy.”
The foundation is chaired by Shaikha Shaikha bint Saif Al Nahyan, Chairman of Make A Wish Foundation and wife of Shaikh Sultan bin Khalifa bin Zayed Al Nahyan, the Consultant of the President.
In 2010, the foundation fulfilled the wishes of 180 children. Among them, 100 wishes were all fulfilled by Shaikh Sultan.
Dr Essam Dohair, Vice Chairman, Make A Wish Foundation in UAE said that the main aim of the foundation is to fulfill the wishes of children who suffer from life threatening disease and who are aged between 4 to 14 years.
Children suffering from life-threatening conditions such as cancer, thalassemia, serious disabilities, birth deformities are provided everything to fulfill their wishlist.
“We have direct orders from the Chairman to fulfill the wishes as soon as possible. This is so after a girl died before we were able to fulfill her wish. This made the Chairman very sad, and since then, we do our best to fulfill all the wishes quickly,” Dohair said.
He pointed out that the wishes they fulfill are not only for national, but also expatriate children.
“All the wishes which we fulfill fall under three main categories: 1. I want to see – where we take them to places such as Disney Land; 2. I want to own – where they want to obtain things like laptops or cameras; 3. I want to meet: where they want to meet the President His Highness Sheikh Khalifa bin Zayed Al Nahyan or His Highness Sheikh Mohammed bin Rashid Al Maktoum, UAE’s Vice President, Prime Minister and Ruler of Dubai, or His Highness Sheikh Mohammed bin Zayed Al Nahyan, Chief of UAE’s Armed Forces and Crown Prince of Abu Dhabi.”
They were a controversial couple on Bigg Boss Season 4 and made headlines for their public display of affection. Ashmit Patel and Veena Malik are in the news again. The two have decided to work together, but for a cause.
Ashmit will help Veena carry out awareness campaigns for her charity in Pakistan that works for thalassemia patients. The two will travel across India and Pakistan to bring awareness about the disease among the people.
A thalassemia minor himself, Ashmit confirmed the news, “We are indeed going to carry out this program. We also plan to provide monetary help to the patients, as the treatment is very expensive. The other details are yet to be worked out about this drive.”
We wish them all the best in their noble cause.
Al Wasl Hospital Blood Bank in Dubai is facing shortage and urgently require type A and O donors (both positive and negative). It is needed for kids suffering from thalassemia and cancer, as well as serious of traffic accidents victims.
When contacted, a staff member at the Blood Bank said that they have sent text messages to regular donors requesting them to come forward to donate blood.
“Blood Bank urgently requires type A and O. But all other blood types are also needed. We need large amount of blood to carry out blood transfusion for thalassemia patients. We have more than 40 thalassemia patients who need transfusion every three weeks.
“We supply blood to hospitals, and in case of accidents we must be prepared and have sufficient amount of blood to give to patients. This is a very serious issue and the lives of many depends on the availability of blood.”
The Blood Bank is open till 6pm every day to receive blood from donors. For further information, please call Al Wasl Hospital on 04 3241111.
However, Al Wasl as asked people not to call as that line may be busy but to come straight to the hospital and donate the blood.
Dick Clark is perhaps one of the most well known faces of stroke survival. Chances are you know someone and you probably think strokes only affect older people but they can happen at any age and about 200,00 happen to people under 65 each year.
It’s the leading cause of debilitating illness in this country but imagine being told as a teenager you’ll spend the rest of your life in a wheelchair.
Eighteen-year-old Ariadne Popma, of Michigan, was determined not to let that happen. A stroke paralyzed her left side two years ago, most likely caused by a blood disorder she has called beta thalassemia.
Electro-stimulation therapy to shock her muscles into working again didn’t work. She couldn’t feel her leg, let alone think about standing on it, until she came to Cleveland and met Dr. Jeffrey Bolek in the Cleveland Clinic’s Motor Control Program.
In three weeks, his therapy not only helped her stand, it helped her walk again. Unlike traditional therapies that electrically stimulate individual muscles, Dr. Bolek’s program forces Ariadne’s brain to tell her body what to do.
“If you can give success in one or two muscles, a lot of the other things fall into place,” Dr. Bolek says.
He also adds his method works faster which may be economical to the patient paying for healthcare. However, the therapy may not work for everyone.
It works as Ariadne walks on the treadmill and watches a monitor in front of her. Two moving lines let her know if she’s hitting her target.
But what keeps her going is the fact that her walking is powering a DVD player that shows a movie. It plays as long as she walks correctly.
“This one actually gives me feedback to use what I need so I can use my muscles accordingly to my brain,” Ariadne says.
The therapy isn’t for everyone but it also helped Ariadne regain control of her left arm. Enough that she can now shuffle cards.
On the New Year’s Day public holiday (Monday 3/1/11), I visited an old friend of mine in Korotogo.
As our children played together and our wives caught up, having not seen each other for a number of months, my friend and I sat watching the sunset and shared a few bilo of kava. Our conversation lasted well into the night as he shared with me the struggle, the leqa he faces every day.
You see, his youngest son, Siha, (incidentally about the same age as my son), must travel to Suva every month for a blood transfusion to replenish his red-blood cells. Siha suffers from a genetic medical condition known as Thalassaemia.
According to “The Thalassaemia Patients and Friends” website, thalassemias are a group of inherited, genetic blood disorders that affect the body’s ability to produce hemoglobin, the protein that red blood cells use to carry oxygen to every cell in the body.
Hemoglobin is a combination of alpha and beta hemoglobin.
The alpha and beta hemoglobin genes regulate the production of these hemoglobins.
The effects of thalassemia vary greatly, depending on how many of the hemoglobin genes are affected and how severely they are affected. The most severe thalassemia is called thalassemia major.
This blood disorder was previously fatal during childhood, but has now been reclassified as a manageable chronic condition.
With proper treatment and regular medical monitoring, thalassemia major patients can now lead long productive lives that include education, careers, marriage and children.
While currently the only cure is bone marrow transplant (BMT), there are hopes for treatment to continue to advance and possibly soon see a new cure through gene therapy.
It is very important for patients to comply with treatment, as it will give them a better life now and also help keep them alive to take advantage of new treatments and a cure.
Imagine you or your little son or daughter having to go to hospital every month for the rest of your life for blood transfusion. That is what lies ahead in Siha’s future.
But there is more to it that blood transfusion. It’s more than a case of topping up on blood levels as if the hospital is some service station.
With the regular blood transfusions comes the accumulation of iron in the body, especially in vital organs.
Siha’s family always strive to live positively with thalassemia, but at times it is frustrating having to deal with a chronic illness that consumes an excessive amount of time with transfusions, constant doctor’s appointments, and various other procedures.
The most frustration is the way illness is managed in our country.
To reduce the extremely (and deadly) level of iron in Siha’s body, he is given an injection.
This injection has the effect of bailing out a ship full of seawater with a small piyala (bowl).
As I sat with Siha’s father and heard the struggle to get more effective (and less painful) tablets and other medicines to manage this condition,
I thought how blessed I was that my children are relatively healthy (the exception being a hereditary allergy to penicillin for my son).
I looked at my son and Siha playing together, and thought about what it would be like if the roles were reversed and Francisco-Xavier not Siha had Thalassaemia.
There are currently 4 people in Fiji who are known to have Thalassaemia.
This minority finds it difficult to raise awareness not just in society but in the medical fraternity about their needs and the desperation they feel regarding the lack of proper and affordable medication available for them.
Many doctors are not informed about thalassaemia and the complexities of the disease. Consequently it is often up to patients to educate them.
A routine liver biopsy is invasive and painful. A machine has been developed, a ferrirometer, which examines liver iron stores painlessly and noninvasively. Clearly, such a machine would dramatically improve patient’s quality of life, yet only two ferrirometers exist in the world.
Healing goes beyond prescriptions and procedures.
Healing is listening, caring, answering questions, being honest, and treating the patient as a human being. Collaboration among disciplines is especially important with thalassaemia because the disease affects so many physiologic systems.
The patient and family must be seen as an integral part of the team and children must be encouraged to be proactive in their own care.
Living with a chronic illness has had an extensive impact on Siha’s life and the life of his family.
Thalassaemia has shaped how Siha and his family live and perceive life and it is a driving force in shaping their personalities.
Thalassaemia and the physical challenges that accompany this disease have created an intense passion for living and a deep appreciation for health.
Each day is a gift to be cherished.
There are positive signs that the CWM Hospital and Ministry of Health are willing to assist this, as yet, small group of people living with thalassaemia. I have promised to help Siha and others like him.
One of the first steps to finding assistance is the formation of a support group. If you think you can help or wish to join the Thalassaemia Fiji Support Group, email firstname.lastname@example.org or call Mahen on 9809453.
May the rest of your week be blessed with simplicity, serenity and spontaneity.
* This article is the opinion of Reverend James Bhagwan and does not necessarily represent the views of the Methodist Church in Fiji and Rotuma, any other organisation or any institution Padre Bhagwan is affiliated with or this newspaper. Email email@example.com or visit the blog – http://thejournalofaspiritualwonderer.blogspot.com
The National Thalassemia Centre is to launch a program to carry out blood tests among prospective marriage partners in a bid to reduce the prevalence of the disease in the country.
The programme for the blood examination of young marriage partners is to be launched as a joint project by the National Thalassemia Centre in Kurunegala, North Western Province Health Ministry and the Ministry of Sports and Youth Affairs.
Chief Medical Officer Dr. Ashok Perera who is also the Head of the National Thalassemia Centre said this program would be launched as there had been no reduction in the prevalence of the disease in the country despite various programs being conducted.
“I have seen broken marriages, deserted children and family feuds just because of this one disease,” says Dr Haroon Memon. He has been treating thalassemia patients for years in interior Sindh and is thoroughly aware of the devastation the disease has and can cause.
Working at the Thalassemia Care Centre in Badin, Dr Memon heads the facility where patients flock from eight districts of the province for a cure. The centre was built under the US Agency for International Development’s (USAID) District Grants Programme in 2005 and now functions with the help of Badin’s district government.
Victims of the inherited blood disorder — that results in severe blood shortage — suffer from an increase of iron in their bodies, diabetes and other major side effects. In the rural parts of the country where poverty, lack of resources and illiteracy result in the late or no diagnosis of the disorder, the social implications become more prominent than the physical ones. Pakistan is counted among those less-developed countries where thalassemia patients are multiplying at a very fast rate. Although no proper research has been done in the country, experts say almost seven per 100 people are carriers, known as thalassemia minors. The carriers are normal themselves but have the potential to transmit it to the next generation causing thalassemia major.
When two carriers reproduce, there are 25 per cent chances that the child will be normal, 25 per cent chances that he or she will have thalassemia major and 50 per cent chances that the child will also be a carrier, says Dr Memon. Therefore a large proportion of thalassemia patients are children.
There is growing concern that thalassemia may become a very serious problem in the next 50 years – one that will burden the world’s blood bank supplies and the health system in general.
With the requirement of a bottle of blood almost every few days, the life of a thalassemia patient is like that of a car, one whose engine runs on fuel, explains Dr Memon. In such a scenario, prevention not cure is what needs to be done to fight the genetically transmitted disease.
In Sindh, most people suffer from beta thalassemia, which is one of the most familiar types. It involves decreased production of normal adult haemoglobin (Hb A), which is the predominant type of haemoglobin.
(All haemoglobin consists of two parts: heme and globin). The globin part of Hb A has four protein sections called polypeptide chains.
Two of these chains are identical and are designated as the alpha chains. The other two chains are also identical to one another but differ from the alpha chains and are termed the beta chains. In people with beta thalassemia, there is a reduced or absent production of beta globin chains.
Dr Memon says that there are patients at his centre who, because of continuous blood transfusions, have developed a concentration of iron in different parts of the body and have to be treated for that. The iron concentrates in the heart, pancreas, liver, spleen and the endocrine glands, he adds.
Such children show signs of a ballooned stomach, broader forehead and jaw bones and prominently bad teeth.
Our job is to maintain the haemoglobin level of the thalassemia patients at 10.5 grams, to control the iron concentration in different parts of the body and to counsel the parents, says Dr Memon.
Law in the making
Concerned doctors are lobbying for a law to be passed for the identification of carriers in the province, informs Dr Saqib Ansari, a haematologist at the National Institute of Blood Diseases (NIBD). “In the year 2010, close to the World Thalassemia Day (May 8), the Sindh Assembly adopted a resolution to make the thalassemia test a pre-condition for nikah, but it could never be formed into a bill,” he says. Dr Ansari claims that this will successfully reduce the danger of thalassemia transmission without stigmatising women.
Meanwhile, Dr Ansari also says that a fatwa has been taken that allows a child with thalassemia major can be aborted before the 16th week.
The government needs to realise that apart from human suffering, supporting thalassemia patients is a huge financial cost, he says. “The disease needs to be controlled before the numbers shoot up.”