Thalassemia Awareness & Its Prevention Seminar

October 25, 2010
Thalassemia Awareness & Its Prevention Seminar

Thalassemia Awareness & Its Prevention Seminar

FAiTh – Fight Against Thalassemia organized Seminar on “Thalassemia Awareness & Its Prevention” at The Research Institute of Pharmaceutical Sciences, Karachi University on 21st October 2010.

We are highly thankful to Dr. Iqbal Azhar of University of Karachi for giving us a chance to arrange the seminar. Special thanks to our speakers Dr. Tahir Shamsi (Hematologist – National Institute of Blood Disorders), Dr. Waseem and Mr. Muhammad Iqbal (Kashif Iqbal Thalassaemia Care Centre (KITCC)) for sparing their precious time.

As the seminar hall could cater 150 students at a time we decided to do two sessions, so that more students can get benefited by the teachings and we tried our best to stream the seminar live so that our online visitors can also see and learn..

For first session we had Dr. Waseem with topic “What is Thalassemia” and Mr. Iqbal with topic “Thalassemia Prevention”. For second session we had Dr. Tahir Shamsi with topic “What is Thalassemia” and Mr. Iqbal with topic “Thalassemia Prevention”.

Seminar’s first session started at 11:00AM with a welcome note, Quran recitation and then our first speaker Dr. Waseem spoke to the audience about What is Thalassemia?

After Dr. Waseem our next speaker Mr. Iqbal spoke about Thalassemia Prevention. A clip of 7 minutes was also shown to the audience to make them understand more clearly What is Thalassemia and how it can be prevented.

First session came to the end with question answer session.

Second session started at 12:15PM with a welcome note and then audience was mesmerized by our first speaker of second session Dr. Tahir Shamsi, he engaged the whole department in his presentation and audience could understand each and everything about Thalassemia.

Audience wanted to hear more from Dr. Tahir Shamsi but as everything has to end so we had to move towards that same 7 minutes clip and then dice was taken by Mr. Iqbal. Who explained audience how they can prevent our next generation from Thalassemia!

Second session ended at 01:30PM with tremendous response from the faculty and students. We are again thankful to University of Karachi and our speakers, this couldn’t have been possible without you all! Thank you once again!

I have tried to record the whole seminar but due to some problem some of the parts are missing, I apologize for those missing parts.

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Note: If you want us to organize a seminar in your office, college or university let us know, we would feel glad to arrange! :)


Thalassemia Awareness Seminar

October 17, 2010

Thalassemia Awareness Seminar Poster


Thalassemia awareness project for NWP

November 12, 2009

Courtesy by: dailynews.lk

The Health Services Director’s Office of the North Western Province will commence a project tomorrow to help the Province get rid of Thalassemia by 2020.

The North Western Province is said to have the largest number of Thalassemia patients.

North Western Province Health Director Dr. R.M.S.K.Ratnayaka says there are 1,700 reported Thalassemia patients in the country and of them 31 percent are found in North Western Province.

The project will take off with the participation of Health and Nutrition Ministry and the Mass Media and Information Ministry.

Prime Minister Ratnasiri Wickramanayaka will participate at the project’s inauguration to be held at the North Western Province’s new auditorium. Health Minister Nimal Siripala De Silva and Mass Media, Information, Enterprise Development and Investment Promotion Minister Anura Priyadarshana Yapa will also participate.

Speaking on the spreading of the disease Dr. Ratnayaka said the cases of Thalassemia have also been reported from North Central and Uva Provinces.

There are about 465 Thalassemia patients in the North Western Province, and of them 370 cases are from the Kurunegala district where the National Centre for Thalassemia was formed in 2003. The Government spends Rs. 300,000 to Rs 400,000 to treat one patient every month. National Thalassemia Centre spends Rs. 200 million on Thalassemia patients every year, Dr. Ratnayaka said.

A child with thalassemia needs blood transfusions three or four times a week and daily injections to control the extra iron in the blood.

The National Thalassemia Centre has 591 registered patients.


Awareness only way to tackle thalassemia, say experts

May 15, 2009

Courtesy by: rxpgnews.com

[RxPG] New Delhi, May 8 – Awareness is the only way to tackle hereditary blood disease thalassemia which afflicts approximately 100,000 in India and nearly 10,000 to 20,000 people are annually detected with it, experts here said Friday.

‘Thalassemia is a hereditary blood disorder where the patients need to undergo regular blood transfusion since their body cannot produce enough haemoglobin,’ said Sunil Gumber, a doctor and thalessemia expert at the Guru Tegh Bahadur – hospital here on World Thalassemia Day Friday.

The average life span of a person suffering from thalessemia major is low since there is no cure for the disease except a bone marrow transplant and regular blood transfusion, he said.

‘Therefore, awareness is the only tool to battle this disease. Pregnant women are tested in the first trimester of their pregnancy to check whether they or their foetus is carrying thalassemia. In case the woman is a carrier, then the husband is also tested, because if both are carriers, there is a 25 percent chance that their baby will be born with thalassemia major,’ Gumber told IANS.

‘Every year India adds 10,000-20,000 patients to the world thalessemia population,’ Gumber told IANS.

‘India has approximately 100,000 people suffering from thalassemia,’ said Shobha Tully, president of the Federation of Indian Thalassemics, while Rashmi Kalra of the Thalessemia India, an NGO which works with patients of the disease, said that there were about 2,000 children suffering from thalassemia in Delhi alone.


Dubai Customs launches an awareness campaign about Thalassemia

May 15, 2009

Courtesy by: Zawya.com

Dubai – The Employees Relations and Internal Partnership Section in the Human Resources Division at Dubai Customs in cooperation with the “Emirates Association for Thalassemia” has launched an awareness campaign under the slogan “a future without Thalassemia=be screened to be safe” for five days, starting Sunday 3/5/2009 until Thursday 7/5/2009.This campaign comes as part of Dubai Customs keenness to increase awareness and participation in events related to both employees and citizens’  general safety and health, and as part of its strategy to take care of all society matters where it devotes a significant attention to health and safety issues. Dubai Customs always sponsors and participates in the emirate’s different social and health activities out of its role to achieve a comprehensive social development beside its major responsibility to boost Dubai’s economy in particular and the UAE in general.

During this campaign, the slogan was displayed on all Customs computer screens; informative booklets and publications.  Various giveaways  items were distributed among employees and visitors identifying the disease, its different types and symptoms as well as its treatment and prevention measures in order to control it and contain it.

Mrs. Feryal Tawakul, Executive Director of the Human Resources Division at Dubai Customs stated that “The Thalassemia disease affects a big number of people from all of the world’s countries and regions including the UAE where statistics have shown that it occurs at the percentage of 1 in 12 UAE locals, which makes it necessary to increase awareness in order to control it”.

It is worth mentioning that Thalassemia is a hereditary disease which determines the production of hemoglobin becoming defective and leading to major child severe anemia in early infancy resulting from one gene which is inherited from the father and the other gene from the mother. Thalassemia can be divided into different types mainly “Alpha Thalassemia” and “Beta Thalassemia” depending on the defective location, whether it is in the gene responsible for producing the protein series of Alpha or Beta in the hemoglobin. It is known that there are hundreds of genetic surges causing the disease and the meeting of two defective genes will lead to the Thalassemia disease.

Thalassemia is transmitted genetically from parents to children. When one of the parents carries the disease, it might be mildly transmitted to the children (they will be carriers), whereas if both parents are carriers, there is 25% chance of the child being seriously infected with Thalassemia, in its severe and dangerous form,


UAE GDA Urges General Public To Get Screened For Genetic Diseases

May 7, 2009

Courtesy by: DubaiCityGuide.com

Friday May 8th marks the International Thalassemia Day, a serious genetic diseases that is common in the UAE
In UAE Genetic Disease Association’s (UAE GDA) drive to create awareness about the medical and social impacts of common inherited blood disorders prevalent in our community, such as Thalassemia, Sickle-cell Anaemia and G6PD, GDA has organized awareness campaigns and blood testing campaigns at various locations in the country.

These campaigns fall under the umbrella of UAE GDA’s ongoing project “Emirates free from new births of children with Thalassemia disease by the year 2012”; through this project UAE GDA aims to identify carriers of the most prevalent genetic disorders in the country and limit the number of newborns with this disorder.

To mark the world Thalassemia day, H. E Dr. Mariam Matar, Founder and Executive Director of UAE GDA, said:
“Since the launch of campaign in 2004, we were able to raise the public’s awareness about this disease, and establish the first UAE GDA genetic diseases lab in 2007 with the help of the Ministry of Health, and concerned federal authorities and entities in both public and private sector. Another major accomplishment for the UAE GDA included enforcing the mandatory premarital genetic disease screening”.

While premarital genetic disease screening is compulsory in the UAE, the cost of these tests may vary from hospital to another but are all in the range of 700 AED, UAE GDA’s screenings are conducted for free for all UAE nationals, and for only 50 AED for all UAE residents.

The screening takes approximately 5 minutes and is relatively painless. UAE GDA patients are granted anonymity, and receive their test results on their personal email within 10 days. Depending on the diagnosis, GDA provides the needed medical help.

Since the launch of the screening campaigns, UAE GDA has successfully screened 7000 individuals and hopes to screen an additional 4000 individuals by the end of the 2009, As part of its strategy, UAE GDA hopes to conduct 30000 screenings by the year 2012.

UAE GDA is organizing round the clock awareness campaigns this year to reduce the impact of the most common inherited genetic blood disorders in the community. The association has already conducted screening in 15 of the UAE’s universities and colleges. GDA has also conducted screening in 16 public and private organizations and bodies, such as exhibitions and organizations such as National Bank of Abu Dhabi Bank, Emirates NDB , Du Telecom, Aswaaq Centre in Nadd el Hammar, and Emirates Post.

“Our activities include promoting health education, screening for genetic disorders, pre-marital screening and genetic counseling. The UAEGDA also facilitates communication and publication of scientific knowledge, to promote education and research in genetics, and encourages interaction between workers in genetics and those in related sciences” said Dr. Matar.

With better knowledge of the genetics of various diseases, testing for the underlying defects with the use of biochemical and molecular techniques is increasingly possible. UAE GDA is fully-equipped with state-of-the-art technologies, mobile units and specialists.

It is worth mentioning that Thalassemia is the result of a genetic defect leading to severe shortages in the production of particular proteins in the blood “globins’”, which is the main component of the haemoglobin found in red blood cell. According to the last study conducted, 1 in 12 people in the UAE carrys a genetic disease gene, we are facing a high risk of developing specific genetic disorders, if both parents are found to be carriers, the risk of passing on the genetic disease increases with each pregnancy. This is UAE GDA’s awareness is concentrating on individuals in premarital stages.”

The practical aim of these screening tests is the prevention and treatment of genetic diseases and blood disorders, they can save lives and reduce pain and suffering. ” added Dr. Matar. Dr. Matar called upon those interested in screening themselves to register at the UAE GDA website: http://www.uaegda.ae/newclient.html


Study shows awareness about premarital screenings lacking

May 5, 2009

Courtesy by: Arabnews.com

JEDDAH: A recent study conducted by the fourth-year medical students at the King Abdulaziz University (KAU) suggests a general lack of awareness about the importance of premarital tests and how they help reduce the incidence of recessive gene disorders, such as thalassemia.

The study called on marriage officials to make sure prospective couples abide by the law and are pre-screened for the presence of shared recessive genes, as well as HIV and hepatitis B and C. A ministerial decision in 2004 obliged prospective couples to undergo genetic testing. In 2008, sexually transmitted infections were added to the mandatory testing.

The KAU study urges more resources be devoted to testing centers, including more staff and equipment. Awareness campaigns, the study says, play an important role in explaining to the general public the importance of pre-marriage screenings.

Last year, the Ministry of Health revealed that over a 10-month period, 49 people tested positive for HIV/AIDS; 3,250 people were found to carry hepatitis B or C; 545 people had the recessive gene for the common blood disorder thalassemia (meaning that their children were at a greater risk of inheriting the gene); and 8,251 of those screened had thalassemia.

The study said premarital tests and awareness centers have so far succeeded in finding out cases but not in changing the view about the test as a tool that can prevent potential health risks.

The study analyzed public perceptions before and after conducting an awareness campaign to evaluate if such campaigns are worthwhile. It surveyed three groups — students (the largest group at 3,479), 645 health care workers, and 655 people who visited these testing centers.

About 38.5 percent of those surveyed said their parents were cousins. The study found that before the awareness campaign, 91.9 percent of the student group did not have a clear idea about why the tests were necessary.

Out of the surveyed health care workers, 77.4 percent said they had not undergone any specialized training pertaining to these premarital tests. The average of awareness jumped from around 8.5 percent to 20.3 percent after the health awareness campaign.

Families and friends seemed to be the main source of information about the tests before the awareness campaign; this was followed by newspapers and TV.

Awareness in the university sample was more among women compared to men and better among students in science-related subjects compared to students of arts. Awareness was also greater among students whose parents were university educated and earned over SR5,000.


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