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53912 Posts in 5667 Topics by 5689 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Two Day Thal. Conference in Lahore (Pakistan)  (Read 11323 times)
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« on: April 25, 2007, 06:52:11 AM »

Hi everyone,

There is going to be a two day Thalassemia conference in Lahore on 27th and 28th of April.

There is also going to be a special Thalassemia Achievement Award Ceremony for Thals.

Guess what!?! Yours truly is also nominated for being a graduate and developing a software for my local Thal. Foundation and being an all-time I.T (Information Technology) geek

I know it's not a big deal for you and me; but compared to the average Thal. here in Pakistan who don't even go to school; my Thal Foundation think that it really is "Something." Plus so far it is just a nomination for me, I think there will be Thals there who "Really have achieved SOMETHING" who will be winning this award.

Let's see if I get an award or not

I'll be leaving for Lahore tomorrow.

Take care, Peace!
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اَسّلامُ علیکم Peace be Upon you
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« Reply #1 on: April 25, 2007, 12:24:13 PM »

Congratulations Sajid,

Please don't think less of what you have acheived. You certainly deserved the award. Please keep us posted about the conference.

Regards.
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« Reply #2 on: April 25, 2007, 01:28:06 PM »

Sajid,,

That's a great news,,i am sooooooooo happy for you, ,and getting award is not that big deal,, but atleast to be appreciated by some one,and on national level,, it's great,, and in country like ours sajid...it's definitely an achievement,, ,,i wishhhhhhhhhh i could be there ,, :'(,,i am trying to persuade my hubby, but i don think i'll be able to make it .

Good luck  and keep us updated.

ZAINI.
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« Reply #3 on: April 25, 2007, 06:28:14 PM »

Hi Sajid.
I'm so  so so Proud of you.Congratulation !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
the sucess is sweeter that is because ,despite your illness you went ahead and achieve your goal.


I will be there in spirit and we are all behind you or next to you, ok, somewhere close to celebrate your sucess,Keep it up.
Kathy
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« Reply #4 on: April 25, 2007, 07:33:06 PM »

Sajid,
     That is such an honor to be nominated for an award!! I am so proud of you. Good luck and I hope you win. Wish I could be there.    Jean
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« Reply #5 on: April 28, 2007, 06:38:58 AM »

Sajid, congratulations

We are so proud of you, you deserve it

Please keep us updated

Manal
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« Reply #6 on: April 29, 2007, 07:15:03 AM »

Hi Everyone!!

I'm back from the 4th National Thal. Conference held in Lahore. I was sent there on behalf of my foundation The Jamila Sultana Foundation (JSF) with Dr. Muhammad Sufyan and another Thal. patient, you can see our picture attached below with Dr. Sufyan in the center and me on the right. He is really a very nice person and I had a wonderful knowledgeable experience with him.

There were several sessions of the conference which was divided in the two days. It was nice to see representatives and patients from 33 Thal. associations from throughout Pakistan under one roof where they presented their performance, troubles being faced and their recommendations for the govt. to overcome them.

There were several specialist who presented their studies such as their experience of Thal in Pak and efficiency of Deferiprone etc. A specialist from Canada Dr. Durhane Wong-Riger, PhD presented the information regarding Improving patient self-management and state of art Iron chelation programme introducing Exjade and the so far collected data about it since the launch of Exjade in Canada.

In the open house session I recommended a solution to overcome the blood shortage issue that each time a driver goes to re-new his/her licence every year; they should first present a certificate of blood donation for it. They replied that it is a great idea but the Human Rights associations cause problems and object on compulsion donation. However they noted my suggestion and would present it to the legislation committee. Let's see what happens about it

One good thing that came forward was the introduction of Feri Nil (Deferiprone) by "Global Pharma." the mother company of my Foundation JSF; who is producing it locally. This will reduce the price of the medicine (Deferiprone) from Rs. 12 per capsule of Kelfer from India to Rs. 7 per capsule of Feri Nil. You can get it from them via your local Thal. association throughout Pakistan.

JSF also announced that it is providing Blood, Desferal, Feri Nil and everything else (from distill water to electrophoresis) free to it's registered patients and I can assure everyone that they are telling the truth as I am there as well. They are doing a great job and I am really impressed by their dedication to serve the Thal. patients.

Guess what Andy! I met Waleed there!! I was so thrilled to meet him in person as we have not seen each other in ages! He was the one who recognised me from the picture that is on my homepage and also he had read the ID card that I was wearing. Along him were the patients from his Thal. association "Fatmid Foundation, Lahore" who were also thrilled to see me as Waleed had told them about me. They are such a nice bunch of kids full of enthusiasm and great will to do anything and overcome all challenges that Thal. throws at them.

I met great specialists and came to know about their success stories. One of them from whom I was impressed was Dr. Shamsi who claimed that he had done several successful Bone Marrow Transplants in Pak. and four of his patient have now become parents thus eliminating the doubt of sterilization after BMT.

In the end of the first day there was an entertainment session where children representing all the Thal. associations came on stage and danced on a Bhangra Beat which was sung by a performer invited to the event. Then the children from the Lahore Thal. associations presented a musical tableau on the famous Anar Kali story. The video clips of these two are attached with the proper player.

On the second day there were several workshops on different techniques to aid Thal. treatment while the children were sent on a trip to the Lahore Zoo.

In the end of the second day on the closing ceremony; the acting President of Pakistan Mian Muhammad Soomro presented gold medals to different Thal. patients Excluding me!!! I was not considered because my Foundation didn't know about sending the proof of my achievements with my nomination. Well, maybe next time I will get an award. Anyway, there were several great Thal. kids who have done great feats such as piloting a plane and going to the K2 (second highest peak) base camp couple of times etc.

Then he presented shields to the organisers who in return presented one to him.

Well it were nice two days full of information and excitement. Plus I met Waleed which was really exciting for me.

Take care, Peace!
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« Reply #7 on: April 30, 2007, 07:48:42 AM »

Hi Sajid,

i am sorry that u didn't get an award, but being nominated is an achievement itself,,and yes i know dr tahir shamsi,he is a nice doctor and as far as i know he is the first person to introduce hydrea here in karachi,and he is using it on thal majors too and getting postive results,i've met one of his patients using hydrea and her mum told me that her transfusion was delayed for 3 to 4 months after using hydrea.

Sajid i was wondering how can we get FeriNil,, as we are not attached with any thal association,,and do u know that it has the same function as well as the same side effects as ferriprox?

Regards,

ZAINI.

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« Reply #8 on: April 30, 2007, 08:21:10 AM »

Hi Zaini,

Feri Nil is same as Kelfer. Global Pharma directly imports the raw material and manufacture it thus reducing the cost compared to ones manufactured in India.

It has the same functions and side effects as Deferiprone. Just ask the center where you go for TransX to contact Global Pharma. Islamabad and buy from them.

Take care, Peace!
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« Reply #9 on: May 03, 2007, 03:06:08 AM »

Thanx Sajid,

I'll try that, as we are using ferriprox,, and cost is very high.

ZAINI.
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« Reply #10 on: May 04, 2007, 10:50:13 PM »

Sajid - Sounds like it was a great conference. I am sorry you didn't get the award, you deserve it. You have good ideas and have accomplished so much. You are always positive and upbeat. I propose we all give you an award from this site for being such a great guy! love, Jean   
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« Reply #11 on: May 05, 2007, 06:04:16 AM »

Awww....

Thanks Jean!

In fact; I want to thank everyone for your unconditional love which is a great reward enough for me.

This is such a nice family. You all deserve an award for being the best support group ever!!!

Take care, Peace!
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« Reply #12 on: January 31, 2015, 06:12:34 AM »

6 years ago ,,, this thread made me join this forum ... because i needed the information regarding Ferrinil tablets , sajid mentioned in this post ...

sweet but heart breaking memories ...   may his soul rest in peace ameen ....
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

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« Reply #13 on: January 31, 2015, 12:29:12 PM »

Amen.

I will never forget Sajid.
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All we are saying is give thals a chance.
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« Reply #14 on: February 01, 2015, 03:05:45 PM »

Always in our hearts.  Such a big part of our group.

Miss you Sajid,

Sharmin
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