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.
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