Tag Archives: donor

کچھ تھیلیسیمیا کی نقطہ نظر سے

کچھ تھیلیسیمیا کی نقطہ نظر سے اضافہ

ڈاکٹر بنو قصاب نہیں۔۔ ہم پر تجربہ مت کرو۔۔ ہمیں مکمل معلومات دو تاکہ ہم اپنا خیال رکھیں اور زیادہ، ہمیں صرف خون نا چڑھائو ہمیں فولاد کم کرنے کا طریقہ بھی بتائو، ہم پر ایرانی ڈسفرال ۔۔ بون مورو یا ہائیڈرا کا تجربہ نا کرو۔۔

ہمیں انسان سمجھو، تجربہ کے لئے چوہا نہیں۔۔ تھیلیسیمیا سنٹر میں ہمارے لئے عام ڈاکٹر نہیں ہیموٹولیجیسٹ لائو۔۔ ڈاکٹر بنو قصاب نہیں۔۔

Some wishes..

I have lots of wishes and plans in my mind for #thalassemia cause & thalassemia kids of #Pakistan .. I have decided to write them one by one.

Doesn’t matter if I can’t fulfill them.. maybe someone reading them have resources to fulfill them.. maybe someone can fulfill them..

Starting from number one.. my top most wish / plan for #thalassemia kids of #Pakistan is to have a HUGE REGULAR strong blood donor system.

2nd wish / plan is also important, that is provide proper iron chelation to every thalassemic.. No to fake useless drugs, no to negligence!

3rd provide some education/skill to every thalassemic so they can understand their disease better & earn some bucks to improve their life..

4th some restaurants take it as a CSR and provide lunch / dinner to #thalassemia kids of every thalassemia centre in Pakistan

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.

Willing to contribute?

It’s so hard to organize a blood camp in Ramadan, not because organizers are fasting and slow BUT people resist donating blood, although one can donate after iftar, but still people think they can get weak after donating.

FAiTh tried arranging a blood camp before Ramadan in different institutes/universities, but couldn’t get permission as they were already booked by some other Thalassemia centers, am glad someone approached them before us 🙂 and I hope they would have get awesome result.

Now FAiTh has decided to organize blood camp after Eid and we are here to ask for help, help in giving us a venue, help in getting us donors.

If you can arrange blood camp in your neighborhood, institute, university, factory, office ANYWHERE, contact us. Just give us venue and donors and we will do the rest!

Hoping to get positive vibes!

Ayesha Mehmood
Official Spokesperson