We began our Sponsor a Child program in 2011 with a hemophilia patient on a special request, since then Fight Against Thalassemia has sponsored a lot of thalassemia fellows.. some for treatment, for education, tests, etc.
Alhamdulillah not a single month passed when any fellow enrolled with us wasn’t provided their required medicines and all this has been made possible with the help of our amazing donors, their trust has made this journey easy for many of our fellows.
5 years and counting thank you so much everyone for the support, help, love and trust
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 🙂
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! =)
“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.
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.
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.”
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.