NeonNarwhal
Well-known member
In Pakistan, thousands of families are caught in a cycle of blood transfusions for their young children. The most common genetic disorder affecting this population is beta thalassaemia major, which requires regular blood transfusions to sustain life.
For Rimsha Nadir, the daily routine of her 3-year-old son Abdul Hadi involves packing him off to a clinic in Lahore every month for what she describes as "a long day of having to stay still." These monthly visits stretch from morning till evening and are a testament to the emotional weight that parents like Rimsha bear as they watch their children oscillate between sickness and survival.
The condition was detected in Abdul Hadi when he was just nine months old, leaving him vulnerable to infections that often leave him bedridden for over six months at a time. As he sits among other families with young children undergoing the same ordeal, Abdul Hadi's tiny body wears down quickly as his fever sets in, signaling the need for another transfusion.
According to Dr. Haseeb Ahmad Malik, the medical director of the Noor Thalassemia Foundation, Pakistan is part of the "thalassaemia belt," a region with high prevalence of this genetic disorder that stretches across parts of Africa, the Mediterranean, and Southeast Asia. The country's estimated carrier rate for thalassaemia major is 5 to 7 percent, making it one of the highest in the world.
Carriers of the disease do not typically exhibit symptoms but can pass on the mutated gene to their offspring, increasing the risk that a child will be born with thalassaemia major. Dr. Malik notes that if both parents are carriers, there's a 25 percent chance a child may be born with the disease and a 50 percent chance they'll be a carrier themselves.
NGOs working on managing the disease have made significant strides in recent decades, improving patient outcomes but also highlighting the need for greater awareness and education. According to Dr. Haseeb Ahmad Malik, a bone marrow transplant is often the only known treatment for thalassaemia major patients, with the procedure being successful in young children as it reduces the risk of complications.
However, funding constraints make this life-saving procedure inaccessible to many families across Pakistan. An estimated 100,000 people are registered on hospitals' lists of thalassaemia major patients, and over 5,000 children are born with the disease each year.
For Mudassir Ali, a 14-year-old from Rawalpindi who received a bone marrow transplant at four years old, his journey towards recovery has been nothing short of miraculous. The teenager credits his father's determination in finding him an unrelated donor and undergoing the costly but life-saving procedure for his full recovery.
Despite the progress made by organizations like the Noor Foundation and other NGOs working on thalassaemia, challenges persist, including limited availability of bone marrow transplants and a lack of awareness among families that could help prevent unnecessary suffering. The story highlights the struggles faced by families in Pakistan where genetic disorders often pose significant barriers to achieving better outcomes for those affected.
In the face of these challenges, there is hope for the future. As Mudassir dreams of becoming a doctor one day to provide similar life-saving treatment options to others struggling with thalassaemia major, his story serves as a beacon of hope in a country where families are fighting against an invisible enemy that requires unwavering support and resilience.
For Rimsha Nadir, the daily routine of her 3-year-old son Abdul Hadi involves packing him off to a clinic in Lahore every month for what she describes as "a long day of having to stay still." These monthly visits stretch from morning till evening and are a testament to the emotional weight that parents like Rimsha bear as they watch their children oscillate between sickness and survival.
The condition was detected in Abdul Hadi when he was just nine months old, leaving him vulnerable to infections that often leave him bedridden for over six months at a time. As he sits among other families with young children undergoing the same ordeal, Abdul Hadi's tiny body wears down quickly as his fever sets in, signaling the need for another transfusion.
According to Dr. Haseeb Ahmad Malik, the medical director of the Noor Thalassemia Foundation, Pakistan is part of the "thalassaemia belt," a region with high prevalence of this genetic disorder that stretches across parts of Africa, the Mediterranean, and Southeast Asia. The country's estimated carrier rate for thalassaemia major is 5 to 7 percent, making it one of the highest in the world.
Carriers of the disease do not typically exhibit symptoms but can pass on the mutated gene to their offspring, increasing the risk that a child will be born with thalassaemia major. Dr. Malik notes that if both parents are carriers, there's a 25 percent chance a child may be born with the disease and a 50 percent chance they'll be a carrier themselves.
NGOs working on managing the disease have made significant strides in recent decades, improving patient outcomes but also highlighting the need for greater awareness and education. According to Dr. Haseeb Ahmad Malik, a bone marrow transplant is often the only known treatment for thalassaemia major patients, with the procedure being successful in young children as it reduces the risk of complications.
However, funding constraints make this life-saving procedure inaccessible to many families across Pakistan. An estimated 100,000 people are registered on hospitals' lists of thalassaemia major patients, and over 5,000 children are born with the disease each year.
For Mudassir Ali, a 14-year-old from Rawalpindi who received a bone marrow transplant at four years old, his journey towards recovery has been nothing short of miraculous. The teenager credits his father's determination in finding him an unrelated donor and undergoing the costly but life-saving procedure for his full recovery.
Despite the progress made by organizations like the Noor Foundation and other NGOs working on thalassaemia, challenges persist, including limited availability of bone marrow transplants and a lack of awareness among families that could help prevent unnecessary suffering. The story highlights the struggles faced by families in Pakistan where genetic disorders often pose significant barriers to achieving better outcomes for those affected.
In the face of these challenges, there is hope for the future. As Mudassir dreams of becoming a doctor one day to provide similar life-saving treatment options to others struggling with thalassaemia major, his story serves as a beacon of hope in a country where families are fighting against an invisible enemy that requires unwavering support and resilience.
this is crazy, like 100k people need blood transfusions every year because they got thalassemia major and it's so expensive to get a bone marrow transplant 
This is heartbreaking what these kids have to go through just because they're born in Pakistan... 5-7% carrier rate for thalassaemia major? That's insane! 
What kind of world do we live in where families have to rely on NGOs and charity to get their kids the treatment they need? 
It's not fair that some kids can't even get a bone marrow transplant because it's too expensive... Mudassir's story is so inspiring though, his dad did everything he could for him. 
We should be doing more to support families like this and raise awareness about thalassaemia major... 
especially when I see all these young children going through this struggle for no fault of their own. It's not fair that they're born with a condition that makes them so vulnerable to infections and requires regular blood transfusions. I can only imagine how emotional it must be for parents like Rimsha Nadir, seeing her son go through this every month 
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. It's not like we're talking about a rare condition here – thalassaemia major affects thousands of children in Pakistan every year! 
. The fact that he received a bone marrow transplant at just four years old and is now thriving is truly inspiring. I hope his experience can inspire others to work towards making bone marrow transplants more accessible to those who need it 
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. It's not just about the medical aspect, but also about supporting these families emotionally and providing them with the resources they need to care for their children 
It's like, what even is that? The government needs to step in and provide more funding for these treatment centers and bone marrow transplants. We need to make sure these kids get the help they need ASAP 
. And to all the parents out there who are going through this, I just want you to know that you're not alone 
it's crazy to me that we're not doing enough to address this issue in pakistan 
what can be done to raise awareness and increase funding for these life-saving treatments? 
. The fact that they're having to send their kids in for blood transfusions every month is just heartbreaking. It's not fair that they're suffering like this because of a genetic disorder that can't be cured yet. 
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. We just need to support him and others like him every step of the way