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.
Four children of a family suffering from Thalassemia have been shifted to Jinnah Hospital Lahore from Dera Ghazi Khan along with their parents for treatment.
An official handout issued here said that in response to the instructions of Chief Minister Punjab Muhammad Shahbaz Sharif, Secretary Health Fawad Hassan Fawad has constituted a medical board comprising senior doctors for the medical examination of the four children of a family of Dera Ghazi Khan, who are suffering from Thalassemia.
The medical board will comprise Professor Riaz-ud-Din, Professor Shaheen, Professor Tariq Bhatti, Professor Nosheen Yousuf, Professor Mefooz-ur-Rehman, Dr Shehla Tariq and Dr Ali Java.
The medical board will hold a meeting at the office of Secretary Health Punjab on Monday and submit its report regarding the treatment of the children, which will immediately be sent to the Chief Minister. The children and their parents have been shifted to Jinnah Hospital, Lahore from Dera Ghazi Khan by ambulance.
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.
The Seeds of Education, Policy & Legal Awareness Association has launched an awareness drive “Save a life, Save a Generation” to control cousin marriages which can pose health risks. In this regard, the NGO also officially launched a website (www.seplaa.com) during a press conference here at Lahore Press Club. Speaking on the occasion, Ammara Farooq Malik, the President of SEPLAA said, “At least 10 per cent of Pakistan’s population or one in every 10 people is a thalassemia minor carrier. At this estimated rate, the number of thalassemia cases will be doubled to over 200,000 in the next 10 years.”
On the last day of 6th National Thalassemia Conference & Workshops I got a call from Dawn News that they wanted to interview me, it was indeed a pleasure to know that FAiTh is being given a chance to prove themselves.
On 30th December I gave interview at their studio, along with me there were Dr. Waleed Bin Azhar – CEO Fatimid Foundation, Karachi.
I have got the complete show video uploaded for you guys.
Dr Waleed tell what’s thalassemia, its issues, complications, etc. [Video 1 & 2]
I was called to be a motivational figure and I talked about life with thalassemia. [Video 3]
Mr. Nafees talked about his two children who were thalassemia major but couldn’t survive. [Video 4]
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.
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.
New dates for National ThalassaemiaConference have been announced by Thalassaemia Federation of Pakistan (TFP).
6th National Thalassaemia Conference and Workshops willnowbe organized from 17th to 19th of Dec, 2009 at Fatima Memorial College of Medicine and Dentistry, Shadman Colony, Lahore.
For further info about the conference, please contact TFP directly at their numbers: 042-5181549, 042-5181749.
LAHORE: Punjab Chief Minister Shahbaz Sharif Sunday announced to bear the medical expenses of a female student suffering from Thalassemia.
The Chief Minister made the announcement while addressing a ceremony of award distribution among students who secured top positions in the intermediate examination.
During the ceremony a female student told the Chief Minister about her health condition and the financial constraints of her parents. She said she was suffering from Thalassemia and that Rs30,000 have to be spent on her medical treatment per month.
While receiving the award from the Chief Minister, the female student asked him for admission at a private university. She said her father is a surveyor and earns a limited salary.
On this, Shahbaz Sharif announced to bear all her medical and educational expenses.
The Punjab Minister for Excise & Taxation and Education, Mujtaba Shuja ur Rehman, has said the entrance test for admission to medical colleges and engineering universities will not be abolished until Booti Mafia is totally eliminated.
He was addressing an award-giving ceremony held here on Saturday at Alhamra in honour of the position holders in the Intermediate Exams-2009.
The minister said every good institution in the world was conducting entry test for admissions. He claimed Booti Mafia had been completely eliminated during the previous regime of the PML-N, however, unfortunately, it started surfacing again during the tenure of the last government. Due to the menace, talented students are being deprived of their rights, he added.
He said Punjab Chief Minister Muhammad Shahbaz Sharif abolished the self finance scheme last year as it was not in favour of talented students. “Around 1500 more seats are now available for admission on merit basis”, he added.
He called on stage a female student, Laiba Mukhtar, a Thalassemia patient who had secured first position in Commerce Group (Among Girls), and offered her his own chair to sit in.
The minister said he would request the chief minister to announce that the Punjab government would bear the expenses for her treatment.
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