Blood Donation Drive

Blood Donation Drive

Note: If you are not in Karachi then visit any Thalassemia Center in your city/country and donate blood on the same day… lets bring change together! =)

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FAiTh in TIF Magazine =)

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

FAiTh featured in TIF Mag

Please click on image for larger view

Ashmit, Veena to tour India, Pak together

Courtesy: indiatimes.com

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.

Thalassemia in Sindh: Children suffer the most with the blood disease

Courtesy: tribune.com.pk

“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.

Beta thalassemia

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.

Iron concentration

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.”

Thalassaemia centre to be set up at Vehari

Courtesy : nation.com.pk

Punjab Health Department will establish Thalasemia Centre at Children Hospital Complex Vehari in collaboration with Plan Pakistan, an international NGO.

The Children Hospital Complex Vehari is a joint venture of Public-Private partnership, which was established by Plan Pakistan and Health Department’s efforts. The Hospital has now earmarked space for establishment of Thalassemia Canter as well.
Health Department will provide Human Resource, U-fone will supply equipments and one time medicine worth Rs 2 million and Plan Pakistan would cooperate for technical and skill enhancement of the human resource made available by the government. U-fone also donated furniture for this center.

Two trained nurses, two data management computer literate supervisor led by a lady doctor will maintain and manage database. Families with positive history of Thalasemia will be provided counselling regarding adverse effects of cousin marriage.
Nishter Medical College, Department of Nuclear Medicine, Multan will do sampling and later skilled staff in Children Hospital will be trained for this purpose.

National Institute of Biogenetic Engineering Faisalabad will be responsible for genetic analysis of the cases.
All treatment at the Thalasemia center would be provided free of cost.

The project is aimed to facilitate the treatment availability in a child friendly environment, encourages parents to make informed decisions and thus reduces the burden of disease and sufferings of the child and parents.

Thalassemia Free New Year!

Thalassemia Free New Year!!

Please fill the form if you are coming

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World Aids Day: HIV/Aids screening to be made compulsory for all

Courtesy: dawn.com

The Khyber Pakhtunkhwa government is considering legislation to make it binding on all people to undergo HIV/Aids test.

“The government will go for the legislation after which all people will be legally bound to undergo HIV/Aids screening. We have already made pre-marriage test of Thalassemia compulsory for the would-be couples,” said provincial minister for higher education Qazi Mohammad Asad on Wednesday.

Speaking as chief guest at a function held in connection with the World Aids Day at the Frontier Women’s College, the minister said that the legislation concerning compulsory screening before marriage was gaining social acceptability and with the passage of time more and more people would opt for such tests.

“Awareness is a shield against the deadly disease of HIV/Aids. We have to keep an eye on the immigrant workers who are being deported on account of having the disease,” he said and added that such people were the main cause of HIV/Aids spread in the country.

Mr Asad expressed his concern over the stoppage of funds for the HIV/Aids programme and said that it would further complicate the situation.

He expressed optimism that the government would provide funds to keep the programme activities going. He urged the students to get more information about the causative agents of the disease. On this occasion, the college students presented skits to highlight bad effects of the disease and ways to avoid it.

The minister said that the deported men were infecting their wives, who didn’t know about their health status.

“The only way to stem the tide of HIV/Aids is to put all those returning from abroad to compulsory screening at the airports. He said that though people hesitate to be subjected to HIV screening, there was no other way to stop the transmission of the disease.

Another function concerning HIV/Aids awareness was held at the Badhber camp where experts advised Afghan refugees to keep themselves limited to their wives.

“Afghan refugees living here frequently cross the border to their country due to which they are at the razor edge of the infections disease,” Dr Jawad Habib Khan of the Project Directorate of Health for Afghan told the audience.He also said that re-use of syringes, transfusion of unscreened blood and shaving at the barbers’ shops should be avoided to stay safe from the pandemic.

“There is an urgent need to tell people about the transmission of the disease, otherwise the HIV/Aids could snowball into major health problem in the country,” he said.Later a awareness walk was also held which passed through the Afghan refugee camp.

All Women Advancement and Resource Development, a local NGO, organised a camp near the Khyber Teaching Hospital where HIV/Aids-related literature was distributed among visitors. Maimoona Noor, head of the NGO, asked the government to provide free test facilities, including CD-4 and viral load because poor patients could not afford cost of the investigation.

She said that creating awareness of the disease through dissemination of information was the right and favourable way to step the disease.

Awards!

This couldn't have been possible without your support!

With you guys support and votes we have won both the categories, that is.. www.thalassemia.com.pk as Best Website and www.iwritealot.com as Best Blog

What were the awards for? and why?

SEPLAA Foundation is a non-profit and a-political think tank which performs as an activist organization to:

• Do research, create awareness and facilitate improvements in the areas of health, environment, society, education, empowerment and law.
• Build the positive image of Pakistan globally through its social media channels and international networks.

It was initially established as a privately funded organization in Lahore, Pakistan in February 2009 as the Seeds of Education, Policy & Legal Awareness Association (SEPLAA).

SEPLAA was later registered as the SEPLAA Foundation in April 2010 under the Societies Registration Act 1860 (Act XXI of 1860) with a specified Memorandum of Association, to work in the areas of health, environment and socio legal reform through awareness publications and dialogues.

SEPLAA arranged Talent of Pakistan, mega event for 2 days, which included Conference on 13th November, on Theme : Hope of Pakistan: Innovation, Creativity & Skills Enhancement & Talent of Pakistan Awards.

SEPLAA aims to show positive side of Pakistan and hence this was an outcome

On 14th November they arranged an exhibition, from Conference to exhibition everything went smooth.

SEPLAA Fan Page on Facebook :

http://www.facebook.com/pages/SEPLAA-Seeds-of-Education-Policy-Legal-Awareness-Association/382912885530

Event Pictures :

http://www.facebook.com/pages/SEPLAA-Seeds-of-Education-Policy-Legal-Awareness-Association/382912885530?v=photos

I contribute, do you?

Hello everyone,

We are creating a pool of donors who can contribute monthly for needy patients of Thalassemia & for our Fight Against Thalassemia campaigns, If any of you are interested to become a donor, let me know.

Our plan is to gather donors then according to the monthly contribution we will be sponsoring few non affording Thalassemia patients. And rest of the contribution would be used in our campaigns (blood camps, screening camps & awareness seminars).

You can even donate 100RS, interested people please drop in your email id and you will be added to our pool of donors.

To contribute there are three options, (1) PayPal (2) Bank transfer (3) Personally handing over!

-Ayesha Mehmood
Official Spokesperson
www.thalassemia.com.pk

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.

Videos:

Photos:

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