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.
Note: If you want us to organize a seminar in your office, college or university let us know, we would feel glad to arrange! 🙂
Bilateral cooperation was the main point of discussions held on Sunday between Prime Minister Mohammad Naji Otri and Cypriot Health Minister Christos Patsalides Syrian-Cypriot.
Talks explored the prospects of cooperation in the fields of pharmaceutical industries, training and qualifying medical staffs and exchanging expertise related to scientific and medical research.
Later on the day, Health Minister Rida Said discussed with Patsalides mechanisms of activating the signed agreement between the two ministries and broadening the standing cooperation, focusing on thalassemia disease and exchanging expertise and information between medical staffs of both sides.
Minister Said said that the Ministry seeks to benefit from the successful Cypriot experience in pre-marital medical tests which helped the country fight thalassemia disease.
For his part, Patsalides expressed desire to cooperate with the Syrian side, particularly in light of the similarity of health conditions and challenges in Syria and Cyprus.
He underlined that the main factor required to improve and upgrade the health situation is providing the necessary funding.
Syria and Cyprus signed health cooperation agreement in 1995 which includes information and expertise exchange with regard to epidemiological studies, communicable disease control in addition to cooperation related to combating thalassemia.
Acting President, Karachi Chamber of Commerce and Industry (KCCI), Talat Mahmood has said doctors should be provided better working conditions to avert the situation of brain drain. He said that it’s really worrying that doctors were going abroad permanently for better prospects. He further said that Pakistan must provide them better working conditions in the country so that they stay in the country and serve the nation.
Criticising targeted killings and kidnapping of the doctors, he advised concerned government authorities to take notice of the issue and deal with the people involved in this heinous crime. Talking to medical students of Dow Medical College (DMC), Patient’s Welfare Association (PWA), he appreciated students for their efforts and opening a medical store, follow-up clinics for epilepsy, SLE, diabetes, asthma, hypertension, tuberculosis and thalassemia under PWA and providing completely free treatment to over 200 patients at Civil Hospital. Former Chairman Banking and Insurance Committee of KCCI, Ateeq-ur-Rehman said that KCCI had played a role in launching PWA’s Diagnostic Laboratory at Civil Hospital.
The Kerala State AIDS Control Society (KSACS) along with HLL Lifecare Ltd. and National Service Scheme (NSS) Unit of the Government College for Women, held a voluntary blood donation camp for the staff and students of the college here.
Around 100 students and staff from the various departments of the college donated blood. This is the second consecutive year for which the college has held the camp. Girls of age groups 18 to 23 participated in the camp and blood transfusions were received from the medically-fit ones.
Kavitha, a first year Bsc student, said: “ This is the first time I am donating blood. It feels really good to have been of use to this cause.” On the other hand, Madhavi and Thejaswini, second year BA students who could not donate their blood due to not meeting the requirements, were ‘sad and feeling blue’, and hung around with many others in the same situation helping out the volunteers. Niliya, an NSS volunteer, finds the response from the students to the campaigning ‘very good’, compared to the previous year.
Rajagopalan, a voluntary blood donor since 1973 (97 transfusions so far), gave a session on blood donation to the assembled students. Popular actress Mallika Sukumaran visited the college to encourage the students and promote the cause.
Around 10 medical officers and supporting staff from the Medical College, RCC, etc. came to carry out the blood transfusion. One of the KSACS Voluntary Blood Donation Consultants, Dr M Suresh Kumar, spoke on the current blood donation scenario in Kerala. According to him, what we need is more public awareness and participation. “People are scared. They don’t know where to go for blood in emergencies. Often they seek help from unauthorised persons who manipulate them and bring in the “professional” blood donors who put up their own conditions. What we need is non-remunerative, altruist, voluntary blood donation—the KSACS’s motto. Owing to the extensive camps that we have held around the city, the blood bank in Trivandrum is now full, but for a few rare blood groups.”
The blood banks are government approved and provide blood to the public, provided there is a medical practitioner’s reference and complies to their conditions. Blood banks provide free service to the BPL category and patients suffering from diseases like Thalassemia, haemophilia and so on, where frequent blood transfusions are required. Reasonable charges, as issued by the government, are charged from the public. Government blood banks are open at the Medical College, General Hospital, Women and Child Hospital (Thycaud), Regional Cancer Centre (Medical College) and Sree Chitira Thirunal Medical Institute (Medical College).
Dr K Chandramohan, deputy director STI at KSACS, points out how blood donation rates are lesser among the women in Kerala in spite of having a favourable sex ratio. “Women are a safer source for blood transfusion with very few cases of blood rejection, when compared to men, who often come under the ‘risky’ category when it comes to STDs.”
Men can donate blood once in three months, while it is healthy if done once in four months for women. However, the donor rejection rates are higher in women, owing to factors like malnutrition, anaemia, etc.
The KSACS has gone around the various colleges in the city including All Saints’, NSS College for Women and for the first time held a camp at the Secretariat, where they got around 165 donors, as a part of promoting voluntary blood donation among government officials.
Red ribbon clubs that provide training in life skills and awareness regarding blood donation and safety have also begun functioning in schools and colleges under KSACS.
Dr Chitra James, a postgraduate student in Transfusion Medicine at the Medical College, feels girl donors are rather too apprehensive and fall behind thinking themselves the “weaker” sex—a completely wrong attitude. “Young girls are very much healthy and their blood has higher regenerating capacities. All they need to focus is on maintaining the right diet and be aware of their limitations (like body weight) when it comes to blood donation.”
Baby Prabhakaran, the state manager of HLL Lifecare, said that more of such camps will be organised around the state and plans to set up district wise forums for efficient capaigning and organisations will be implemented soon.
The KSACS is a society registered under the the state government’s department of health and family, along with the National Welfare Board and NACO.
BLACK History Month celebrations will hit the right note for charity with the annual Broadwater Farm Family Gospel Festival this Saturday.
Organised by unstoppable community campaigner May Richards MBE, the festival is marking its ten-year anniversary in its campaign to raise money for children diagnosed with sickle cell and thalassaemia.
The 79-year-old has dedicated her life to fundraising to improve the quality of lives of children with the genetic disorders and is on a shortlist for the 2010 Housing Heroes Awards from Inside Housing magazine and the Chartered Institute of Housing (CIH).
Solo artists, choirs and dancers will unite for an evening of spirited and uplifting gospel music — themed Peace, Unity and Love — at the Broadwater Farm Community Centre, in Adam Road, in front of special guests including the high commissioner for Jamaica, the deputy high commissioner for Ghana and Haringey mayor Eddie Griffith.
Paul Dennehy, head of tenancy management (south) for Homes for Haringey, said: “May has a strong love for children and an even stronger desire to help people, young and old.
“She has raised thousands of pounds for the Haringey Sickle Cell and Thalassemia Project over the years. Visitors travel from far afield to enjoy this festival of uplifting entertainment and performances.”
Sir David Weatherall, 77, an Oxford researcher-physician, was among the first to use the tools of molecular biology to understand thalassemia. He was in New York to receive the Lasker-Koshland Special Achievement Award for “50 years of international statesmanship in biomedical science.” A condensed version of conversations with him follows:
A. In 1956, after I’d finished my medical training, I was drafted for compulsory military service. At the time, there was an insurgency in Malaya, where the Commonwealth forces were fighting the Communists, and I was not anxious to get involved with that. Nonetheless, I soon found myself on a troop ship for Singapore.
When I got there, because I had no pediatric training, the army put me in charge of a children’s ward looking after the families of Commonwealth soldiers. And there I encountered a 2-year-old, the daughter of a Gurkha from Nepal. She had profound anemia. No one understood why. We kept her alive with transfusions.
So in my spare moments, I went to the biochemistry department at Singapore University Hospital, and worked with people there to try to figure it out. Within six months, we had an answer: thalassemia. That was a big surprise. This genetic disease was thought to occur only in the Mediterranean.
Q. WHAT EXACTLY IS IT?
A. It’s a defect in the genes that makes it impossible for hemoglobin to properly form. Of course, in the 1950s, we understood little about hemoglobin’s biochemistry. Thalassemia was, and is, a terrible disease. The children generally don’t live to adulthood — and then only with constant transfusions. In the case of this little girl, her parents eventually took her to their village in Nepal, where she died.
Q. SO SHE WAS THE BEGINNING OF YOUR INTEREST?
A. Yes. The army next sent me up to northern Malaya, where the last of the fighting was going on. I used this time to search for more thalassemia. I’d construct equipment from old car batteries and filter paper, and that’s how I separated the different hemoglobins in the blood samples I’d collect. Whenever I found anything abnormal, I’d post the slides to a good old boy, Herman Lehman, at a laboratory in London. We actually found one or two more cases that way.
A three-year genetics project has been launched in Birmingham to help tackle the city’s high infant mortality rate by raising awareness of inherited genetic disorders. The project has three strands: educational, clinical and primary care.
The primary care strand of the project, which was launched this week, aims to raise the profile of inherited genetic disorders through the public’s engagement with GPs. Three GP practices in the Heart of Birmingham Teaching Primary Care Trust are offering a screening programme for inherited blood disorders, such as sickle cell anaemia and thalassemia. They are raising awareness of other genetic disorders and are identifying families appropriate for specialist referral. The clinical strand of the project includes developing 30 new molecular tests for genetic diseases over the next three years. ‘We wanted to launch in primary care to raise the profile of this area among GPs and Primary Care’, said project manager Yasar Eltaf, from the Birmingham Women’s hospital.
The project’s focus is on genetic risk generally, but first-cousin marriage is a risk factor for inherited genetic disorders. Birmingham’s infant death rates were linked to first-cousin marriage by a Channel 4 Dispatches programme aired in August this year. A community educator from the Enhanced Genetic Services Project, Zahira Maqsood, emphasised: ‘This project is not about chastising families and community groups for their marriage and cultural choices. It is about enabling people to be aware of potential health risks and choices available to them’.
Infant death rates in Birmingham are 8.2 per 1000 population, almost double the national average of 4.8 per 1000 population. About 139 infants die each year in the city.
As I typed the list of thalassemia centers all over Pakistan, my cellphone started ringing and diverted my attention. On inquiring who was calling, I heard a sad and depressed voice on the other end. A father’s voice.
I usually get calls but there was something special about this particular one. The guy got married around two years ago to the love of his life (who was his cousin). Now they have a one-year-old baby… and that baby is a thalassemia major.
According to him, no one in their family had this disease, but both of them were thalassemia minor and they didn’t know about it before.
He asked me “Why did it happen to us?”
I couldn’t stop myself from asking him “In this advanced age, why didn’t you know about a simple blood test?”
Because of my previously written articles people think I amagainst cousin marriages, though I am not. I just wish for people to go through a simple blood test. If every existing thing has a reason behind it, then the thalassemia test has a reason too!
After talking to the father for more than 30 minutes and telling him what he should do now, what are the options etc, I ended the call with the realisation that there is still a huge section of our population that lacks awareness regarding this issue. I believe the media has a strong influence on people and they should come forward and take part in raising this awareness. I bet if a TV ad ran on every single news channel for just a short period of time, it would save several lives.
Once again I will state I am not against cousin marriages, but if you are going to get married please get yourself tested!
A simple blood test can save your next generation… is it too much to ask?