9th National Thalassemia Conference & Workshops

December 19, 2014

Disclaimer: Writing these notes first as a patient then as an associate member of Thalassemia Federation of Pakistan

Finally after so long delay national thalassemia conference took place in Fatima Memorial Hospital College of Medical & Dentistry in Lahore on 29th-30th November 2014.

Delegates from all over Pakistan started reaching Lahore on 28th November, there was an executive meeting held on 28th November in Carlton Hotel where executive members were invited and few patients from Punjab were also there as observers.

The conference kicked off on 29th November at FMH College of Medical & Dentistry at 9AM after the member’s registration. Starting from the Quran recitation and welcome address by president TFP Punjab, activities of TFP were shared by general secretary TFP Dr. Yasmin Rashid, with few words from Dr Joveria Manan, Chief Guest, Actor Adeel Hashmi and President TFP the ceremony for gold medal to outstanding thalassemics was started.

The below mentioned patients were given gold medals:

Rumaisa Noor, Amna Abdul Hakeem, Mehvish, Shahzaib, Mujtaba and Noman.

Sara Ehsan, final year student of MBBS also got recognition from TFP.

Gold medals are given to the patients who keep their ferritin within 1000 to encourage them and to motivate other patients.

After tea break the plenary session was started on topic Emergencies in Thalassemia by Prof Joveria Manan. The talk was as usual on old stuff regarding emergencies caused after transfusion and iron chelation drugs, such as blood count drop by ferriprox, joint pains by kelfer / ferriprox etc.

Dr Jovaria shared with us that patients are getting HIV Aids infected blood and recently few cases were diagnosed in Pakistan and this is alarming situation for patients & parents. She also shared about kits and blood bags from China are being used in many NGOs and are giving reactions in many patients and thalassemia centers are suggested to stop using them…

After the plenary session scientific session on follow topics:

1) Diagnostic dilemmas in thalassemia

2) Non transfusion dependent thalassemia

3) Role of iron deficiency anemia in the propagation of beta thalassemia gene in Pakistan

Call it a sad point or negligence that till date we are only aware of thalassemia minor and thalassemia major.

Mostly patients, parents and even doctors are not aware of thalassemia intermedia and due to that many intermerdia patients are misdiagnosed and bound to be tagged as thalassemia major and are forced to get transfusion just like thalassemia major.

The criteria few people used is if the patient got first transfusion under 2 years of old is thalassemia major and if above 2 years old then thalassemia intermedia. I would say it is better to get electrophoresis done and checked by some renowned hematologist.

Non transfusion dependent is basically thalassemia intermedia which is less severe stage than thalassemia major. Intermedia patients are most likely to get transfusion in 3, 6, 9, 12 months unlike thalassemia major who have to get transfusion in every 15-20 days.

Many intermedia patients from Pakistan are now on drug called hydroxyurea which helps them increase transfusion gap more and many patients are maintaining their hemoglobin on 7-8 gram with the help of hydroxyurea.

As a patient point of view I personally think hemoglobin should be maintained at 10 gram and many doctors are trying hydroxyurea on thalassemia major which is not helping them. I would appreciate if any hematologist is reading this please do share your point of view too.

Personally my hematologist has told me that hydroxyurea is basically for cancer patients and it can work for intermedia patients but it is dangerous for thalassemia major, according to him he can shift me to hydroxyurea if I want but instead of helping me it will worsen my condition and my life span will be affected. Another verification I got from a patient that he asked the doctor who is doing trial of hyrdoxyurea on thalassemia major, doctor literally told him that he is not willing to do trial on major but he is bound/forced to do so.

Hence I will again say get your mutation and electrophoresis checked by renowned doctor before jumping for the cure, you might hurt yourself by the so called cure and doctors shouldn’t risk patients life like this.

After the lunch few patients were selected to speak on issues they are facing regarding treatments etc. I was selected by Hussain Jafri, the issues I raised were:

1) No / less representation of patients from Sindh in conference

2) Non availability of blood and iron chelation drugs in thalassemia centers of Karachi

3) Thalassemia Federation Pakistan need to be more strong for patients unity and issues.

Fellow thalassemics Faseeh and Batool talked about blood infections and jobs issues of thalassemics.

I really wish TFP let the patients come forward and voice their issues; we need 5 representatives / patients for 5 provinces in executive meeting. And I wish TFP take notice of bad screening, HIV cases and non availability of ferriprox.

The day ended with general body meeting and elections, where a resolution was passed that one of patient of a province will be attending committee meeting, province was selected by lucky draw and patient was selected by societies from that province. Federal was selected first and Rumaisa Noor will be the first patient to attend executive meeting inshaAllah next year.

Personally I and few other fellows think one patient from each province will not harm the federation but it will definitely help patients and parents and above all thalassemia community.

Anyhow second day of conference was on these topics:

1) Non transfusion dependant thalassemia

2) Iron chelation in NTDT

3) Role of hydroxyurea in thalassemia intermedia

4) Complications specific to NTDT

5) Puberty issues of thalassemia

Since thalassemia intermedia patients receive less transfusion their ferritin remain in control too, they don’t need aggressive iron chelation like thalassemia major, just like major their iron chelation drugs are same too, if they are on hydroxyurea then they need to be careful otherwise they can lead a much longer and better life.

Role of hydroxyurea I have discussed earlier too, if you have thalassemia intermedia you should give a try to hydroxyurea.

Complications of NTDT as I learnt are less severe than major, less transfusion, less iron, fewer troubles.

The interested and much needed topic was puberty issues. How a patient should take care of his/her self. How to maintain their growth, girls for breast development and menstrual cycles and boys for testicles growth etc?

If there is a delay in growth then it can be treated with medicines now. It is no longer a big issue. Patients with the hormones treatment are getting married, having kids and if they get proper care then no one can believe they are thalassemia patients.

Later on the societies from all over Pakistan shared the progress of thalassemia prevention programs.

Dr Gerald Mason (UK) discussed about recent advances in prenatal diagnosis. Since last few years we have the prenatal screening facility in Pakistan. I just hope parents take advantages of such facilities and don’t increase the number of thalassemia patients in Pakistan.

Lastly all the NGOs/societies working for thalassemia were invited to share their achievements and work with the audience and indeed it was a great pleasure knowing so many NGOs/societies working tirelessly for us/patients all over Pakistan.

FAiTh was given a chance too to showcase our work. Being a patient myself I think running the cause and generating funds for fellow needy patients is a very small contribution to the thalassemia community.

Below are the changes I think TFP should make:

1) Advertise about conference as much as possible so that more and more patients/parents/doctors can attend and get benefit.

2) Invite international speakers on different topics, we have gone too far from the phase of “what is thalassemia”, we need more knowledge please.

3) Societies should forward their outstanding patients name to get recognition, don’t give gold medal but at least sharing their success stories/achievements will boost other patients moral.

4) Invite media, so more awareness can be created.

5) 1 patient from each province should be given place in the meetings.

6) Patients group should be formed [in process after long discussion]

7) Arrange workshops all over Pakistan, it’s saddening when I get calls from different places of Pakistan and they ask me how can they save their kids lives and when I get to know they know nothing about iron chelation. Please give them awareness.

8) Keep check and balance on all the societies for proper screening, safe blood transfusion, iron chelation and growth assessments.

9) Thalassemia centers from all over Pakistan MUST be member of TFP and if any center is not a member then they must not be given permission to work in Pakistan for the safety of patients.

All doctors and fellow thalassemics who attend the conference please do share your notes/views/pictures or any information / knowledge you want to share 🙂


Thalassaemia centre to be set up at Vehari

December 31, 2010

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.


Four children of a family suffering from Thalassemia shifted to Lahore

November 24, 2010

Courtesy: brecorder.com

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.


Awards!

November 17, 2010
This couldn't have been possible without your support!

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


Drive against cousin marriages

February 13, 2010

Courtesy by: thenews.com.pk

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.”


FAiTh on The First Blast @ Dawn News

January 24, 2010

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]


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.


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