Tag Archives: thalassemia

14 years..

Though our family struggle for thalassemia is more than 30 years old.. but Salman the founder of Fight Against Thalassemia started the online awareness 14 years ago.. though he is no longer among us but we aim to keep his cause alive till our last breath inshaAllah..

We couldn’t have come along till here without our family, friends, colleagues & donors support.. we are nothing without you all..

Thanks a lot for the tremendous support, love and trust! may Allah always be with us all and accept our struggle for thalassemia free Pakistan & healthy thalassemics — ameen!

Haripur Thalassemia Care & Prevention Center

I am really slow in updating my journey on blog.. we visited Haripur Thalassemia Care & Prevention Center last month and here I am with all the updates gathered from there after a month :p

We were basically invited for a seminar to encourage patients of Haripur who are really in bad condition, to spread awareness and to awaken people of Haripur to come forward and help the patients there.. to make them realize that people from other cities like us are coming just for the sake of future generation so the people of Haripur, industrialist, politicians etc should do their part too.

As soon as I confirm my participation I started to gather funds so that we could take some infusion pumps and desferal injections with us for the patients of Haripur Thalassemia Center, since there are 175 patients registered but none of them is on proper iron chelation.

Soon we gathered funds for 5 infusion pumps and more than 200 injections Alhamdulillah.

Journey begins towards Haripur. Participated in the seminar, met patients, parents, many people from Haripur.. tried to play very small part.. distributed infusion pumps and injections in the most deserving patients.

Haripur Thalassemia Center is being run by Shahid Afridi [not the cricketer], in a rented place which has been changed quiet a few times due to one or other reason in last 6 years. Currently it has total 2 rooms & a laboratory. They are trying to run in the limited capacity, it is the only thalassemia center of Haripur with 175 patients registered.

Center is badly suffering from lack of place, staff, desferal injections, blood, funds etc.. we have tried to do as much as we could but we really wish if someone can sponsor the place completely and help them generously.

Here are the picture & videos of some events from Haripur visit..
My small talk
Story of a thalassemic from Haripur.. listen and realize the condition..

Distributing infusion pumps & injections
FAiTh member donating blood to encourage others
Our member Hammad donated blood for the first time
Condition of Haripur Thalassemia Center
Live from Haripur Thalassemia Center
Interview with admin Haripur Thalassemia Center
Donated a heater to the center

Complete album https://facebook.com/FightAgainstThalassemia/posts/372701916437445

100 cannula donated by a donor to Haripur Thalassemia Center, we all should donate these basic necessities to the centers


Sorry for too many videos & photos 🙂 just LOVE to share all the updates with you all!

If anyone wishes to sponsor a thalassemia kid OR want to donate anything to the Haripur Thalassemia Center feel free to contact us, we will share their details 🙂

5 Years & Counting..

Transamin
Transamin

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 

زندگی۔۔

صحت ایک نعمت ہے۔۔ اور اس کی قدر تب زیادہ ہوتی ہے جب آپ بیمار ہوں یا جب آپ کے ہاتھ میں ایک لمبی دوائی کی پرچی یا ٹیسٹ کا پرچہ آتا ہے، تب سچ میں صحت کی قدر ہوتی ہے۔

تھیلیسیمیا میجر کی زندگی روز انجکشن لگانے یا دوائی کھانے یا پھر ہر پندرہ دن بعد خون لگوانے میں گزر جاتی ہے۔۔ اس پر اگر خون نہ ملے تو ڈونر ڈھونڈنے میں کچھ گھنٹے اور کبھی دنوں لگ جاتے ہیں۔

آپ لوگ ضرور سوچتے ہونگے کہ آخر مسئلہ کیا ہے؟عائشہ ہمیں بار بار کیوں تھیلیسیمیا کا بتاتی رہتی ہے، اس میں کیا ہوتا ہے، ٹیسٹ کرالینا چاہئیے، وغیرہ وغیرہ ۔۔

آپ لوگ بھی پڑھ کر سوچتے ہونگے، ہاں ٹھیک ہے پڑھ لیا، اب ٹیسٹ کرائیں نہ کرائیں ہماری مرضی۔۔

بلکل یہ آپ کی مرضی ہے۔۔ پر ہمارا بتانا بھی فرض ہے۔۔ زندگی اتنی آسان نہیں جتنی نظر آتی ہے۔۔ کیا معلوم میرے ان مسائل کو بتانے سے آپ اپنی کرسی سے اٹھ کر ٹیسٹ کروائیں اور اپنی آنے والی نسل کو اس بیماری سے بچا لیں؟

تھیلیسیمیا میں مستقل خون لگنے سے ہمارے لئے اور بہت سے مسائل پیدا ہوتے ہیں، جسم میں فولاد کا بڑھنا، ہیپاٹائیٹس، ایڈز، جگر کی خرابی، دل کی کمزوری اور بہت سے مسئلے ہوتے ہیں۔۔

یقین جانے جب خون کا نمونے لیب میں دے کر گھر آتے ہیں تو ذہن میں سو سوال ہوتے ہیں، اگر ہیپاٹائیٹس ہوگیا تو؟ اگر کوئی اور مسئلہ ہوگیا تو؟ ویسے ہی خون لگانے اور فولاد کم کرنے سے تنگ ہیں، کچھ اور ہوگیا تو کیا کریں گے؟

Blood Tests
Blood Tests

چلیں میں اور آپ تو مہنگے سے مہنگا ٹیسٹ بھی کرالیں گے، دوائیاں بھی لے لیں گے۔۔ ان کا کیا ہوگا جن کے پاس نہ ٹیسٹ کے وسائل ہیں نہ دوائی کے۔۔ ہیپاٹائیٹس کا ایک ٹیسٹ آغا خان لیب میں سات ہزار کا ہوتا ہے۔۔ اور وہی ٹیسٹ ڈائو لیب میں دو ہزار آٹھ سو کا۔۔ غریب کہاں سے لائے گا اتنے پیسے۔۔ امیر سے امیر بندہ بھی کبھی کبھی پریشان ہوجاتا ہے۔۔

Bill
Bill

اور اگر خدانخواستہ ٹیسٹ پوزیٹیو آجائے تو پھر ایک لمبی لسٹ دوائی کی یا ٹیسٹ کے نہ ختم ہونے والے سلسلے۔۔ اس ڈر اور خوف کے بیچ گزرتی ہے ایک تھیلیسیمیا میجر کی زندگی۔۔ اور اس زندگی سے بچانے کے لئے ہم چیخ چیخ کر آپ سے کہتے ہیں کہ ٹیسٹ کروالیں۔۔ خدارا اپنے بچوں کو اس اذیت سے بچا لیں۔۔

World Marrow Donor Day & Some Memories

Sorry in advance for the lengthy post 😉

17th September 2016 was World Marrow Donor Day and it bought back so many memories to me..

Just after few months of baji [eldest sister] wedding back in 1998 we lost Noman bhai at the age of 16 due to less awareness & knowledge regarding proper blood transfusion and iron chelation, he passed away with iron overload and we two [Salman & I] kept wondering what is going to happen next.

After Noman bhai’s funeral dad got to know regarding bone marrow transplant being performed in India and has great success rates, all we need is a 100% matched HLA donor & 25 lacs for each patient.

Mom, dad, sister, first cousins all got tested for HLA donor [still in debt for their efforts :)], none of them matched us.. but we both were 100% matched to each other. We joked around if we can donate our marrow to each other 😉

Dad & mamu started contacting people who went for bone marrow transplant from Pakistan and from them to doctors in India. They got to know regarding International Bone Marrow Donor Registry, doctors signed us up and started looking for international donor, we got 1 from Italy & 1 from Germany. Both agreed to be our marrow donor that also without charging a penny [though we told them we want to pay]

In 1999 we flew to Chennai India, Apollo Hospital Chennai was totally a new world to us. They were so equipped, had so much information regarding thalassemia, doctors and staff over there told us how iron chelation is also important along with blood transfusion.

Made so many new friends like @Retesh, staff & doctors at Apollo Hospital were so shocked to see mine & Salman’s correspondence with them in fluent English [we were 11 and 13 years old at the time] so that was quiet amazing for them. Me & Salman met doctors, talked to them regarding our donors, bone marrow transplant procedure etc. Donors decided to send us marrow through a special procedure, after few days they asked for funds, we agreed to transfer, after few days they decided to fly down to India and donate to us in Chennai and then after few days doctors, I still remember their name Dr Ishwar told my parents that bone marrow transplant is very much successful in kids under 10 years and since the donors are also making excuses we would suggest you to drop the idea of bone marrow transplant.

After spending 3 months in Chennai with hopes to get cure we fly back to Pakistan, we are very much sure that was Allah’s best plan, we can never question HIM and we will never. After arriving back dad gave us option to fly Italy and try over there.. but we siblings decided to stay back and live the life at fullest.

And that is when Salman decided to create website on thalassemia with complete guidance and that is how Fight Against Thalassemia journey begins, whatever we learnt from Noman bhai’s death & in our stay in Chennai we decided to spread that information among other thalassemia fellows.

Meanwhile our stay in Chennai a family from Hyderabad Pakistan with 3 of their thalassemia kids arrived and stayed with us, their eldest son Gulraiz was supposed to get bone marrow transplant, we had amazing bonding with the family, it was indeed a shock for all our family even my mamu who see off them at airport that Gulraiz was a true copy of our late brother Noman, 100% resemblance was enough to get us close to him and family.

Gulraiz’s brother was his donor, he donated the marrow and the procedure started.. but just after a few days the sad news reached to us in Pakistan that Gulraiz couldn’t survive from some infection and passed away in Chennai.

We got to know their other two kids couldn’t live much too and passed away one after another, though we still wish to find and meet their family but since its been 17 years and we are unable to find any of their details.. [if anyone can help please do let me know, would love to meet them :(]

It seems like a long journey we have gone through but the memories will always be a great asset 🙂

Donors, be it a blood donor, monetary donor, marrow donor OR organ donor they all are amazing kind of people, more like an angel on the face of earth. Whoever you are, where ever you are, we are THANKFUL to you, we can never pay back for your kind deeds.