All About Me & My Surroundings!

9th National Thalassemia Conference & Workshops

No Comments

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 :)

Share

General Secretary PDF PPP – Shakir Alam

4 Comments

Few days ago on Benazir Bhutto’s birthday according to the frontier post PPP leaders, workers donated 28,300 blood bags. From that bags 4500 bags were given to different thalassemia centers in Karachi and a MEGA TRANSFUSION EVENT was organized at Expo Center Karachi on 26th June.

Being a thalassemia major and an activist I didn’t like the idea of it and I had some reservations, despite of it being open event I choose not to attend. We patients know what is right, what is wrong, I know getting transfusion on a place where you can’t provide immediate treatment if God forbid anything wrong happens is the MOST idiotic mistake I will make ever in my life.

Transfusion is not a piece of cake, if God forbid patient get reactions or any infection he/she has to be rushed to the emergency at any cost, it is life and death matter and to be frank government risked 4500 patient’s lives with that.

I will blame PPP government + thalassemia centers who agreed for the event and took risk of 4500 lives.

General Secretary PDF PPP Shakir Alam shared about the success of the event, pictures of the event and I couldn’t resist I simply asked him few questions and he couldn’t control his anger and used foul language in his comments, I asked him to behave, but he didn’t listen to me and continuously kept on misbehaving, when I told him my parents have been supporters of PPP for 40 years he started dragging my parents.. He has been deleting the comments I made and continuously kept on harassing me.

A lot of my thalassemia fellows saw the conversation and asked him to behave but he didn’t listen to them too. After 3 hours of commenting I stopped replying and today I found him again commenting about me, when I asked him to stop it.. he said he would have replied if I wasn’t female.. lol.. whaat? you first misbehaved for 3 hours and now you coming up with the most stupid line.. he said sorry to me in INBOX, I simply asked him to say sorry on the status where he was harassing me.. but now what? he has blocked me from the profile =)

I saw the pictures of the event, they used tables as bed for patients and ropes to hang blood, the picture itself has been giving me SHIVER!!! I wonder what they think of us? animals.. available for qurbani??

Please do check the pictures, all his pictures, comments etc. You can also read his status here : https://www.facebook.com/shakir.alam.16/posts/532934346811147

Being a government official he must be polite, he must know how to behave and how to give respect, if I am not misbehaving then I demand you to behave too.. Disgusting PPP party and their workers. Shame on you guys.

Share

Iron Chelation

2 Comments

Friends,

I have been writing for thalassemia patients, their needs, treatment, sponsorship, donation and Alhamdulillah with amazing friends/donors I have been able to do A LOT for thalassemia in past 3 years.

It is indeed great when on a single status/tweet/email SO many donors come forward and help our thalassemia fellows. Alhamdulillah currently we are sponsoring more than 10 thalassemia patients with the help of our generous donors, I really can’t thank enough my donors & Allah for the trust and support.

Am sure a lot of you now know about thalassemia and its treatment, along with regular blood transfusion patient needs to get iron chelation to get rid of excess iron they get from blood transfusion, if they don’t get iron chelation they won’t be able to live healthy life and due to that we have lost many thalassemia fellows till now.

For iron chelation there are 2 treatments, first is injection desferal and second is tablets ferriprox/asunra/exjade etc. I have got to know Civil Patient Welfare is providing Asunra/Exjade for free of cost to the patients who can’t afford. And that is mashaAllah definitely a good cause they are doing with the help of city government but sadly they are not providing injection desferal which is LOT more cheaper than Asunra/Exjade.

A lot of patients have approached me to get them desferal injection because Asunra/Exjade/Ferriprox has LOTS of side effects and not suitable for many patients while desferal injection is suitable for everyone and doesn’t have side effects like other drugs.

I wasn’t taking any request for injection desferal since a patient who is on desferal needs at least 80 vials per month which costs around 10400/- PKR. And there are many patients who have approached me till now, I have turned them down. But I guess I can’t turn them down anymore.

Injection Desferal costs around 130/- per vial, if you can donate for the cause please let us know, you don’t need to sponsor any kid for whole month, but at least few hundreds per month wouldn’t be much of burden. If you want to donate directly to the thalassemia centers, let me know I will provide you details & if you send me donation I will buy the desferals and hand over to needy patients OR I will donate it on your behalf in thalassemia centers.

Please remember iron chelation is as important as safe blood transfusion for thalassemia patients, if a patient won’t get iron chelation they will not be able to survive… if any of you want more information about iron chelation or thalassemia please let me know, I would LOVE to give details.

Share

Blood Donation

No Comments

Visited Fatimid Foundation after so long on 30th January… Depressed to see all the condition there… how can people be so arrogant with patients..?

So much of blood shortage… Patients with 2-3 gram hemoglobin have to wait a week for their blood transfusion… Highly disappointed…

My mom & dad has been organizing blood camp for thalassemia children when me, Salman and Noman bhai were so young, they knew the pain of a thalassemia child, they knew how it feels when a child have to be dependent on other’s blood for their live.

After mom & dad and after losing Noman bhai we decided to organize blood camps on our own, we started to take care of camps etc but we were really taken back when people didn’t take interest, we literally had to beg people for blood donations.

After Salman I used to take 5-10 friends of mine to thalassemia centers and they used to donate every 4th month happily, they still do. I stopped organizing blood camps because of people behavior; I couldn’t beg them for blood donation…

But today here I am again, to beg for those thalassemia patients who can’t afford treatment at Aga Khan, who can’t arrange donor every time they need transfusion and who can’t pay screening cost…

If you are a student and you can organize a blood camp in your college or university, let me know.

If you are in a political party and you can organize a blood camp in your area, let me know.

If you are running a factory/company and you can organize a blood camp there please let me know.

You don’t have to pay for anything, all you have to give space to a thalassemia center & donors, if you can convince your fellows, friends, relatives, employees, workers please do so…

Your blood help save thalassemia child’s life! They look at others with a hope to continue their lives. A single bag of blood help saves 3 lives!

And it is in the Quran “And whoever saves one – it is as if he had saved mankind entirely.”

Share

Trip to Interior Sindh

No Comments

Since it was winter vacation we decided to explore Sindh :)

Journey started from Karachi, we reached Hyderabad at 9PM, checked-in Hotel Venus at Thandi Sarak, went out for dinner at Shalimar Broast, got back in hotel and slept. Warm and cozy hotel it is.. Shalimar Broast is good for pait-pooja, tried Chicken Shashlik, Chicken Karhai & Zinger Burger.

Day 2 started with breakfast at a dhabba with chai, paratha & omelet. Headed to Qadamgha Moula Ali (A.S) then to Sindh Museum but sadly it was 27th December and the city was closed… had no choice but to leave for some other place. We decided to go for Thatta.

Reached Thatta at 2:30PM, headed out for Shah Jahan Masjid, Mazar Shareef Hazrat Syedna Abdullah Shah Jeelani Ashabi (R.A) and then to Makli Hills. Decided to travel back to Hyderabad without wasting any time… stopped at Jamshoro for refreshment. And we started our journey for Dadu.

For a night stayed at Bhittai Hotel situated on By Pass Larkana Road Dadu. It was inaugurated just 4 days ago. AMAZING service, awesome rooms, reasonable rent. Highly recommended.

Left for Larkana, reached Ghari Khuda Bakhsh. Can’t deny the fact of it being beautiful!, parked the car, went inside and was informed that we can’t visit the mazar for 30 minutes since there’s some VVIP coming for Fatiha..

For next 30 minutes we wandered around, found a bazaar, talked to few shopkeepers. Was informed that among Benazir’s children only Aseefa visit mazaar mostly, Bakhtawar & Bilalwal visit once in an year. Through none of our concern who visits and who doesn’t but as shopkeeper was sharing it we listened to him. They have a municipal corporation working there BUT the amount of trash we saw there was unbearable.

We were informed after 30 minutes that we can visit the mazaar now since VVIP has left. Crossing the security we entered in mazaar.

It was indeed depressing to see the 95% crowd there was just for pictures, wandering around, giggles, laughter, etc. It was disgusting to see people standing in front of tombs and making selfies.

Later on we traveled back to Larkana, stayed for a night and then headed towards Moen Jo Daro in the morning. Had GREAT time learning about the history of Moen Jo Daro, saw the collectibles of Moen Jo Daro at the museum and spent some time in Moen Jo Daro Guest House.

Started traveling for Sehwan Shareef, visited Gar e Qalandar (R.A), it was really peaceful atmosphere at the Gar. Visited Takht e Qalandar, Indus River and then we went to the mazaar.

Was supposed to stay at mazaar for Fateha for some time but we found out that Shia community is there for some matam… in 26 years of my life I saw this for the first time and sorry, no offence but I was feeling so uncomfortable that we all decided to leave the mazaar as soon as possible.

And we started our journey back to Karachi.

Few things I would like to mention, the CHILLY & FOGGY nights & mornings of interior Sindh IS TO DIE FOR!, the roads are awesomely built, greenery you see while travelling is BEAUTIFUL!, the history behind our Buzurg Gawara E Deen, Moen Jo Daro and historical places is remarkable.

I believe I have just managed to cover 25% of Interior Sindh, there’s so much to see, visit and discover in Sindh. We really underestimate the beauty of Sindh.

It was really a memorable trip of my life Alhamdulillah. Couldn’t agree more to the phrase “Jagah jii lagane ki duniya nahi hay / Yeh ibraat ki jaa hay.. tamasha nahi hay” after visiting Bhutto’s & Hazrat Lal ShahBaz Qalanda R.A mazaar.

Note: We have tried to capture pictures of all the places, please check album for names & images of the places.

Album : https://www.facebook.com/blessedAyesha/media_set?set=a.10153811481520727&type=1

Share