Jackie Shroff wants to direct short, social films

December 31, 2010

Courtesy : realbollywood.com

If at all actor Jackie Shroff turns director at any point, it might not be a typical Bollywood potboiler. He says he would rather make meaningful and short films to create awareness about diseases.

‘I want to make short films on thalassemia, AIDS, polio, leprosy…I want to do all those things,’ Jackie told IANS.

The actor, who will be seen in ‘Bhoot and Friends’, doesn’t think he would ever make a feature film thanks to his free-spirited and restless nature.

‘As far as a fullfledged film is concerned, till now I doubt I have the patience to hold the cast and crew together. I’m ittle flighty…my mind is that of a hippy,’ he added.


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

December 2, 2010

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.


‘New Blood, Safe Blood’

October 16, 2010

Courtesy: yentha.com

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.


Before you say ‘qubool hai’

August 23, 2010

Courtesy: tribune.com.pk

When five-year-old Affifa goes to school she carries more than the burden of books on her shoulders. “My daughter was diagnosed with Thalassaemia, a blood disorder, at the age of three,” says Wajahat Ayaz, who works as an engineer at a leading power company in Karachi.

Affifa’s problems are compounded not only by the fact that her body generates an abnormal form of haemoglobin cells, but also by her rare blood group, known as the Bombay blood type. According to Dr Saqib H Ansari, chief of the Thalassaemia programme at the National Institute of Blood Diseases, there are only seven known donors in the country who share this blood group. “Patients like Affifa survive on blood transfusions, but it becomes a huge problem when one has a rare blood group because one can’t find matching donors,” Ansari says.

However, the little girl is lucky for now. Nuzhat, a woman of 40, is providing crucial life support for Affifa. “I will donate my blood to her as long as I live,” says Nuzhat. But what will happen after that?

Ayaz, who earns around Rs30,000 a month and spends close to Rs10,000 of that on monthly treatments for his daughter, says he can only pray that a miracle like Nuzhat will be around. However, that’s not the issue which torments him each day.

“If only I knew that we, the parents, would be the cause of her illness,” laments Ayaz, without saying anything about what he would have done had he known this fact beforehand.

Thalassaemia is a genetic blood disorder which a child inherits from their parents. “If both parents are Thalassaemia minor — that is, they carry the disease but it is not active in their system — there is a 25 per cent chance that their child will be a Thalassaemia major — an active patient –a 50 per cent chance that she will be a Thalassaemia minor and a 25 per cent chance that everything will be normal,” says Ayesha Mehmood, the spokesperson for the Fight Against Thalassaemia (FAiTh). Also, if a Thalassaemia minor’s partner is normal, their children, in all likelihood, will be born free of the disorder.

initiatives

Ayaz supports recent initiatives taken in certain provincial assemblies regarding the nikahnama law that advocates testing for blood disorders like Thalassaemia, Hepatitis C and HIV/AIDS in couples before they marry. He suggests the government should make it mandatory to mention blood types on national identity cards so that potential donors can be identified.

But so far the Khyber Pakhtunkhwa provincial assembly is the only legislative body which has passed a bill making it mandatory for couples to carry out Thalassaemia and Hepatitis C tests before the marriage takes place. The law does not ban couples from getting married if they find out they are both, for example, Thalassaemia minor carriers, but it gives them the advantage of knowing what they’re getting into. Meanwhile, the Sindh Assembly has to date only passed a resolution urging the federal government to consider making such tests compulsory.

On July 08, 2010, the Punjab government’s Local Government and Community Development Department proposed eight amendments to the nikahnama law; these included complete medical check-up reports prior to marriage. However, the amendments were criticised because of the caveat that the nikahnama document must also be signed by the parents of the consenting adults and were consequently withdrawn.

Member of the National Assembly Sherry Rehman has strongly criticised the Punjab government’s move. Rehman fears the measure might increase the number of forced marriages in the country. “Having parents sign the nikahnama would have meant the return of the wali system for women. The Lahore High Court has a ruling against it,” she says. She added, however, that she was all for testing couples for disorders before marriage and would strongly advocate such a bill.

Meanwhile, Masood Alam, who is about to get married this year, voices another concern. He says that even if blood testing before marriage becomes federal law, it would be hard to convince families that it is a healthy measure. “I and my fiancée may agree, but our families might not want us to get tested because of social pressure and superstition,” Alam says.

Even Nuzhat, Affifa’s donor, says that girls in Pakistan already face a lot of problems getting married and the proposed changes to the nikahnama law may become an added hurdle.

Dr Ansari proposes a solution. “We can follow the Iran model, where the man is asked to get tested first,” he says, adding that the woman only need be tested if the man is found to be suffering from, for example, Thalassaemia minor.

Also, families can be convinced about the benefits of testing with a little persuasion, says Shahzad Shah, who married in 2009 and got himself and his fiancée tested before marriage. “After we told our families about the advantages, they themselves took us to get our blood tests done,” Shah says. He adds that today he is a proud father and his daughter has no genetic blood disorder.

Religious scholars say that while conducting blood tests is not a necessity before marriage, according to Shariah law there is no harm in doing so. Darul Uloom Karachi’s Mufti Asghar Rabbani and Jafferia Alliance’s Maulana Sheikh Hasan Salahuddin say tests can help identify problems that an unborn child might face, because in the end, the child has to suffer the consequences.


Indian children with AIDS from infected blood transfusions

July 20, 2010

Courtesy: asianews.it

Jaipur (AsiaNews) – Three children who suffer from thalassemia in Jodhpur in Rajasthan this week contracted HIV after blood transfusions required to treat the disease. It is not the first time that such cases occur in India.  According to statistics, over the past five years thousands of children have fallen ill with AIDS after blood transfusion from the state blood bank.

Marwar Thalassemic Society says that in the last six months eight children have contracted HIV and hepatitis C for 43 additional transfusions of infected blood. The three children are in care at the Ummed Hospital which treats children with thalassemia free of charge. Hospital managers said they had scrupulously followed the guidelines of the National AIDS Control Organization. Both hospitals blood banks are testing to verify that the donated blood is healthy, but often this is not enough.

“Tests of blood cells are not adequate,” Pascoal Carvalho, immunologist and member of the Pontifical Council for life tells AsiaNews. “We need the Nucleic Acid Testing (NAT), but since it has a very high cost it is not always done”.

Performing NAT on the blood cost 1000 rupees (16 Euros) and in most cases the cheaper Elisa test is carried out: “The Elisa test” continues the doctor, “often fails to identify the HIV virus, especially since detects it only after the virus has been circulating in the donor’s blood for three months”.

India’s health system is well aware of the technologies needed to solve the problem, but does not invest: “The government must urgently upgrade its monitoring system in blood banks. The problem of infection is even more tragic because they are poor families who use government blood banks.

For Pascoal Carvalho, the only positive note is that better therapies are being introduced to treat thalassemia. But the doctor calls the government on its responsibilities: “The instruments for Nat cost 400 thousand rupees (6700 million) and 1000 rupees each test, but poor patients can not afford it. Only the government can require that Nat be used in all hospitals and blood banks and provide subsidies for those who must take the test. Only then will we avoid similar tragedies in India. ”

Fr. Antonio Grugni, PIME missionary and doctor in Mumbai, told AsiaNews about the health situation in India: “The number of poor in India is enormous and they can only afford public health, where there are few doctors for a huge amount of patients. You can not say that the government does nothing: the cure for tuberculosis and leprosy are free, for example. It is not true that in India there is no money. There are but are often misused by individual states”.


Raj Govt. sets up committee to probe HIV+ blood transfusion

February 11, 2010

Courtesy by: mynews.in

Jaipur: Rajasthan Government has constituted a three-member committee to probe the episode of blood transfusion from HIV positive donors to six thalassemia children causing HIV infection in them.

Medical Education Secretary CM Meena said the government had been informed that five patients in Jodhpur and one in Tonk were given blood donated by HIV positive donors without mandatory blood testing and investigations.

This erratic blood transfusion led to transmission of dreaded HIV infection in these patients, Mr Meena said adding that a three-member committee headed by Rajasthan AIDS Control Society President RND Purohit would probe the entire episode and would submit its report within seven days.

Mr Meena said the state government would take all measures to save the lives of these patients.


Hospital injects kids with HIV+ blood

February 11, 2010

Courtesy by: news.oneindia.in

Jodhpur, Feb 10: In an incident that screams for better blood screening system and steps to counter medical negligence, a hospital in Jodhpur, Rajasthan injected human immuno-deficiency virus (HIV) tainted blood to children suffering from a inherited blood disease.

While some media reports say that the number of children affected by this fatal case of medical negligence are five, another says that the hospital turned six children suffering from thalassemia HIV positive.

Reports say that children contracted the HIV during blood transfusion at Umaid Hospital.

The hospital authorities are trying to wash their hands off the allegations saying that the infection might have happened from elsewhere.

In another report, Dr DR Dabi, hospital superintendent is quoted as saying, the blood screening system for HIV prescribed by the National AIDS Control Organisation (Naco) is not foolproof.

While a report submitted to the government gives a clean chit to the hospital, Rajasthan State AIDS Control Society had sought a detailed report from the hospital.


Positive response to premarital test

January 3, 2010

Courtesy by: thepeninsulaqatar.com

DOHA: An awareness campaign on pre-marital health screening being waged by the Supreme Council of Health (SCH) focusing major shopping malls in the city has generated a positive response from the public, the SCH said yesterday.

Qatar launched the mandatory pre-marital tests on December 13. The Communication and Media Department at SCH launched the campaign earlier this month to raise public awareness about the tests through a variety of programmes.

The SCH has set up stalls at shopping malls to provide detailed information about the tests to the visitors and clear their doubts.

Trained nurses are available at the stalls to interact with the visitors and answer to their queries. Informative posters, flyers, booklets, and CDs about pre-marital screening are also being distributed to the visitors.

A video highlighting the importance and procedures of the screening has been shown at these stalls. The stalls are open from 5pm to 9pm daily and from 2pm to 10pm during the week-ends.

“These stalls have been attracting a good number of visitors daily. One of the most frequently asked questions by the visitors is regarding the confidentiality of the tests,” SCH said in a statement yesterday.

SCH has already made it clear that the special committee dealing with pre-marital tests will ensure strict confidentiality to protect the rights of all the concerned parties.

Physicians and paramedical staff, such as nurses, lab technicians and others should strictly abide by the commitment not disclose any medical secrets that come to their knowledge.

Regarding the individuals intending to get married and their relatives who are subject to the medical examination process, a special non-disclosure declaration is developed to be signed by both parties to maintain confidentiality.

The screening aims to prevent the spread of hereditary, genetic and communicable diseases in the society and create a more healthy future generation.

The inherited and contagious diseases included in pre-marital screening are: sickle cell ; hemoglobin abnormalities, i.e. thalassemia and sickle cell; testing the clotting factor to discover Hemophilia (A &B) if there is a family history or any medical indicators of the disease; syphilis, HIV (AIDS), hepatitis B & C. The tests have been conducted in five primary health care centers- Airport, Rayyan, Gharrafa, West Bay, Al Khor.


Notes: 6th National Thalassemia Conference & Workshops

December 25, 2009

6th National Thalassemia Conference & Workshops
17th – 19th December 2009
Lahore

Day 1: Conference Inauguration – Pearl Continental Hotel, Lahore

Ceremony started with Tilawat-e-Quran at 4 pm, Mr. Hussain Jafri, Secretary General TFP Punjab Chapter gave Welcome Address, and Dr. Yasmeen Rashid Secretary General TFP gave introduction of TFP.
TFP was established in 2004, Thalassemia patients registered with TFP are 25000, 39 NGOs working with TFP till date.

Prevention program being designed and developed by the help of WHO.

More than 15 billion are being subjected for the prevention by Punjab Government.

Mr. Iqbal, TFP Exec. Comm. Member being called to let us know the feedback of a Thalassemic parent, Dr. Jovaria Manna, Chairperson, Medical Advisory Board briefed us about scientific sessions and workshops of the next two days.

Dr. Jovaria informed us about Uniform Protocol, book on iron chelation therapy guideline which she has edited and being distributed all over Pakistan.

Mr. Iqbal told us about his blood bank and Thalassemia center, which is in Karachi and working successfully.

Address by Guest of honor Prof. Majeed Chaudhry, Principal, FJMC & Prof. Humayun Maqsood, Principal, FMCMD.

Both of them appreciated TFP’s work and event and and promised to support conference by all means.

Lt. Gen (R) Moin-ud-din Haider, President TFP thanked all for attending, requested for moral and monetary support for TFP and societies, told us about government being concerned in Thalassemia issue these days and gave shields to the mentioned below patients on their achievements.

1) Ayesha Murtuza from Abbotabad – LLB
2) Laiba Mukhtar from Lahore – 3rd position in Inter & 1st in I.COM
3) Master Abdul Samad – 5th passed Hafiz-e-Quran
4) Mujtaba Shareef – Hafiz-e-Quran
5) Miss. Atiya Kamran from Karachi – Inter pass, married
6) Mr. Ejaz Haider from Karachi – Volunteer for Fatimid
7) Ameen Tipu – Earning, married & have two kids
8) Usman – Hafiz-e-Quran

– End of day 1 –

Day 2: Patient Safety Awareness Workshop in Collaboration with World Health Organization – Fatima Memorial College of Medicine & Dentistry, Lahore

Started at 9:30 am with Tilawat-e-Quran, Dr. Yasmeen Rashid gave briefing over the workshop objectives; workshop was conducted by WHO on their World Alliance Of Patient Safety.

She briefed about iron chelation, transfusion, screening, hepatitis, aids, etc.

She even requested the NGOs to care about screening, cleaning and hygiene.

Later on Mr. Hussain Jafri briefed us about World Alliance of Patient Safety program.

WHO launched this program in October 2004.

Programs started under World Alliance:
1) Patients for patient safety
2) Patient safety research
3) WHO patient safety campaigns
4) Education and training
5) Implementing change

You can read about IAPO – International Alliance of Patients Organization at their website: IAPO

After Mr. Hussain, Dr. Jovaria came on dice to give us guidance over Patients Safety, she told us a patient should be aware of everything, he should ask the nurse while getting transfuse about screening, blood bag details, make sure that blood belongs to him, patient should get vaccination done, she even advice to get splenotomy done by good doctor not by any general surgeon.

After Dr. Jovaria, Question and Answer session was conducted, followed by panel-list of three doctors, three society member and three patients.

I was given the chance to be among the three patients, was given chance to brief over my activities and Thalassemia.com.pk, which got appreciated by all the people attending.

– End of day 2 –

Day 3: Prevention & Treatment of Hepatitis B & C of Patients Receiving Multiple Blood Transfusions – Fatima Jinnah Medical College, Lahore

Day 3rd was a bit hard to manage, as there were two things going on side by side at the same timings, one side conference over Hepatitis, other side scientific sessions over exjade, prevention & genetic counseling.

Not much new was being told, but there was a session which I wanted to attend badly and I have made notes of it, sharing it with you

Management of Pregnancy in Thalassemia Major – Dr. Yasmeen Rashid:

Patient who want to start new family should work hard to get her ferritin as low as 500, and must maintain her hemoglobin at 10 – 11 gram.

Pre Pregnancy Counseling:
Iron chelation is discontinued for 9 months

Pre Pregnancy Evaluation:
Cardiac, Liver, Vessels, Pancreas, Viral Infection, Iron Status – all things should be monitored closely.

During Pregnancy:
1) Iron should be around 300 to 500 for better health of baby.
2) Hemoglobin should be maintained at 10 – 11 gram.
3) Low blood transfusion, small quantity every 10 to 15 days to give enough oxygen to the body.
4) Vital signs should be monitored during transfusion.
5) Discontinue iron chelation.
6) Continuous check on ferritin level.
7) Cardiac monitoring every 3 months.
8) Endocrine function, oral glucose test should be done
9) Last but not the least, Best doctors!

Effects on the fetus if anything is wrong:
1) Fetal Hypoxia
2) IUGR
3) Premature Labor
4) Fetal Demise

Delivery:
One should wait for normal delivery to happen, but as it takes lots of efforts/energy so the patient should be monitored closely for cardiac functions.

In case of IUGR or Fetal distress cesarean should be performed.

Iron Chelation should be started within the first week after delivery.

– End of day 3 –

Program Guide: Day 1 , Day 2 , Day 3 a , Day 3 b

Pictures: 6th National Thalassemia Conference & Workshops

Note: I have made notes of my interested topics only, but I have attended almost every session… If you want to know about anything kindly drop a comment I will try to respond as soon as possible… But to be frank there wasn’t much new knowledge to hear.


What is Thalassemia?

December 10, 2009

Courtesy by: 24medica

Thalassemia is an inherited condition that causes a problem in the production of hemoglobin. This leads to anemia, which is a low red blood cell count.

What is going on in the body?
Hemoglobin carries oxygen from the lungs to the tissues. It also carries away the waste product of carbon dioxide. In thalassemia, something goes wrong with the production of hemoglobin. When defective hemoglobin is incorporated into red blood cells, the red blood cells do not function properly. They are more likely to die off. This leads to anemia.

Thalassemia is an inherited disorder. In a person with thalassemia, one or both parents are positive for the disease. When one parent is positive, the child will have thalassemia minor. When both parents are positive, the child will have thalassemia major.

What are the causes and risks of the disease?
Thalassemia is a common genetic disease. It is more common in people of African, Mediterranean, and Asian heritage.

What are the treatments for the disease?
With severe thalassemia, regular blood transfusions are needed. The person will also require folic acid and other nutritional supplements.

An individual who has frequent red blood cell transfusions can develop iron overload. This can be avoided with chelation therapy. This is a process that removes excess iron from the body. This therapy may need to be started early in childhood.

Some treatments for thalassemia are still being tested in clinical trials. These include:
– changing the abnormal hemoglobin genes using medications similar to those used in cancer chemotherapy
– bone marrow transplant and infusions of stem cells, which are starter cells
– specific gene therapy targeted at the abnormal chromosomes

These approaches are usually reserved for severe thalassemia.

What are the side effects of the treatments?
Frequent blood transfusions can lead to an iron overload. Excess iron can end up in various body tissues and cause skin discoloration, liver disease, and diabetes. Chelation, which involves daily injections of an iron-binding agent, can help eliminate the excess iron from the body.

There are risks with any blood transfusion. These include an allergic reaction, infection, and sometimes hepatitis or HIV, the virus that causes AIDS.

Bone marrow transplants can cause the body to attack the new bone marrow. Or the new bone marrow may not function at all.

What happens after treatment for the disease?
A person with severe thalassemia may need frequent blood transfusions for the rest of his or her life.

How is the disease monitored?
Thalassemia is monitored by frequent blood tests. The person will need to be followed closely by the healthcare provider. Any new or worsening symptoms should be reported to the provider.


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