Zaid Rao, voice of thalassemia in Pakistan and beyond

Zaid Rao with his brother and mother Shaheen Rao.

Zaid Rao with his brother and mother Shaheen Rao.

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One of the people who inspired me to start blogging is the late public figure and thalassemic warrior from Pakistan Zaid Ilyas Rao.

Zaid and I spoke on Facebook just months before he passed. I was absolutely enamored by his passion for raising awareness about thalassemia.

His videos show a young man who is fearless, confident, and authoritative when he speaks. Sadly, Zaid and I never did meet in person, but I was fortunate to meet the woman who continues his legacy to this very day: Zaid's mother, Shaheen.

I asked Shaheen to share a bit about Zaid's life with us. What she shared is probably one of the most inspiring Q&A's I've ever read.

Please share my Q&A with anyone who might benefit from reading and leave a comment to share your thoughts. Shaheen and I will be very pleased if you do.

Now, a note from Shaheen Rao about her beloved son Zaid: "Zaid, an apple of all eyes, was lively, cheerful, and optimistic. He was born with thalassemia major. Having this blood disorder since birth inspired Zaid to defy the odds and not only live his healthiest life, but encourage others to do same. Zaid always liked to lift the spirit of his fellow thalassemics. Even with agonizing treatments and a struggling lifestyle, he chose to take every single day with a positive attitude and considered himself a normal individual. He was passionate about working strenuously for the welfare of patients with thalassemia and projecting them as an asset to society."

“Life is continuously challenging me, but I am not going to give up till the end.” — Zaid Rao

He also said, "I have decided to work harder now and fulfill the expectations of my parents, teachers, and wellwishers. I will become one of those persons who will depart the world, but leaves signatures to be remembered and appreciated."

Below Are Questions and Answers With Shaheen Rao About Zaid Rao's Life.

Josephine: Please tell us what Zaid's greatest accomplishments were?

Shaheen: Zaid's plans were vivid and clear, his ultimate goal was to be President of Pakistan. He passed all his school and college exams with flying colours, graduating with a Bachelor of Science in Commerce.

He chose Chartered Accountancy as a career, and attempted his "D" module exams just a week before his sad departure. He was also inducted for articleship at A.F.Ferguson Co, a member of the firm PricewaterhouseCoopers.

Zaid was given many awards in recognition of his academic excellence and extracurricular activities. His greatest achievement was to be honoured by the most prestigious business institution, Federation of Pakistan Chamber of Commerce and Industries.

He delivered a Marvellous speech in presence of top class business icons, ministers, senators, and judges of Pakistan. His suggestions and proposals were highly appreciated and were also nominated for the next election of said institution.

How old was Zaid when he passed?

Shaheen: Zaid was 23 years old at that time.

What happened? Why did he pass so soon?

Shaheen: Medically, the cause of Zaid's death was Hepatitis C (HCV), leading to liver cirrhosis. HCV screening is not done the way it should be in 3rd world countries. A patient profile is majorly hidden in a pile of lies in organisations that are funded by people not in the government.

This creates a barrier in full assessment of a patient. Patients in Pakistan are kept in delusions. Operating standards and protocol are blindly and criminally followed, hence leading to complications which also appeared in Zaid's case.

After his splenectomy, he went through the procedure of repairing his stitches five times. Most thalassemics die too soon because proper health care, counselling, and protocols are simply unavailable.

Moreover, illiteracy, poverty, negligence of parents, non-professionalism of doctors, and insufficient facilities in case of emergencies in non-governmental organizations are the main reason of early death in thalassemics.

What inspired him to become a public figure?

Shaheen: Zaid was a natural born leader and man of action. He had the power to find and create light out of dark. He always loved challenges and was inspired by his teachers who were always helpful and motivated him.

Other people encouraged him to be strong enough to convert every negative energy to a positive one. Rather than choosing isolation, Zaid Rao chose to expose his life and inspire others.

By speaking openly on different forums, his fear was taken out of him. Because of his natural speaking abilities, he aimed to spread awareness about thalassemia and its complications.

He knew his community needed someone to be the voice of them, the person to address problems as well spread positivity.

How did he become the person to talk about thalassemia in Pakistan?

Shaheen: His speaking skills, power to influence, determination, courage and confidence were amazing. He believed thalassemics are no less than any person who does not have thalassemia. His mission started during school. He aced his studies and non-academic achievements, but was concerned that other thals were not motivated to live a normal life. That made him to speak to thals personally and gradually.

He started his mission from a small scale and gradually escalated to the mass level. He highlighted the bright picture of will-power against the challenges of thalassemia at every available forum, as well as on print and electronic media.

He was always on the top preference list of media houses to represent the thal community, to sum this vast issue brilliantly in the the short available time provided, which made him idol of every eye. Here is a look at Zaid and some of his signatures:

Zaid is one of my heroes in the thalassemia community. How did you raise him to become so brave and strong? What did you tell him?

I, as the mother of two thalassemic sons, dedicated every moment of my life to raise them and followed their treatment and studies as well as possible. The idea was to raise them up to their level, caliber and abilities, rather than what they were deprived of.

I encouraged them to live their lives more productively than non-thalassemics. I always boosted them up to participate in many educational cultural and community based campaigns related to the fight against thalassemia. Moreover, the basic role were of his teachers, as they always tried to be on his side to motivate, polish, and support him at any level he wanted to shine at. Luckily, his friends and of course doctors were always very generous. They admired and motivated him to think, set goals and accomplish them. We, as parents, showed him the way.

He took thalassemia as a challenge and in return I bet what he took as challenge made him never give up. Any negative vibes that come in any part of his life we stood by him by telling him to "face it like a soldier rather than giving up." All the rest he conquered himself. All any thal needs is an ignition.

I have been told that it is difficult to receive blood that is filtered. Do you know if there is a way for patient in Pakistan to get filters for their blood?

Well, Even up to this day. blood screening and safe blood is an issue that is top of the list in the thalassemia community in Pakistan.

Firstly, we do not have proper facilities of screening overall in Pakistan. Only a few organisations or trust or hospitals have sufficient modern equipment, which leaves patients sometimes hopeless and disappointed. The filters can be bought at high cost which ranges approximately $30-60 and up, depending on quality and market availability.

This becomes high cost in Pakistan currency which can be afforded by very few of Thals. Hence, others are forced to compromise to have poorly screened and unfiltered blood, leading to high Hepatitis C numbers overall in Pakistan. Allergic reactions, infections and even few cases of HIV AIDS have been reported in thalassemic majors.

What were some of the ways that Zaid kept himself inspired to keep going?

Shaheen: His ambition. His willpower. His fighting spirit, determination and ability to take negative feedbacks as a challenge to achieve the much bigger aims that he set for himself.

He faced severe jolts of illness, but each time transformed into a more mentally strong and ambitious person, by the grace of Almighty Allah.

What was it like for Zaid to grow up with thalassemia in Pakistan?

Well being a thal in Pakistan becomes an issue for other people more than the patient himself. Most patients face challenges from relatives, apart from close family members.

He faced financial issues regarding proper health care, social issues regarding his appearance, and psychological burdens due to his extreme illness. Either it was his splenectomy, meningitis, or bone problems. But amazingly, each time, Zaid became stronger than before.

Luckily, he overturned all of his challenges through his confidence, power to speak well and influence others, and inspire ability and accomplishment in others.

Do you have any other children with thalassemia?

Yes, I have one more thal son younger than Zaid named Zalkiefel. He is 22 years old and in his 3rd year of PHARM-D.

Do people donate blood easily in Pakistan? If not, how did you go about findings donors?

Shaheen: Of course, the trend of concept of voluntary blood donation is appreciable in urban areas, but in rural areas it is comparatively less. Secondly, we have around 100,000 thal majors as the number is high, which in turns has less supply (if speaking in terms of statistics).

Few cities have Non-Governmental Organizations that arrange blood for thals, arranging blood donors camps in factories industries, educational institutions etc. But, especially in cases where rare blood group is required it sometimes create a very difficult situation,as B Positive is the most common group.

O Positive, AB Group and Bombay Group are rare in Pakistan, therefore the donor of such groups are also rare.

Is there anything else you would like to tell the community?

According to the ideology of my departed thal champion, which he always said as motivational speaker at different forums:

"Every thal child is gifted with different capabilities, please try to find them and nourish them accordingly." - Zaid Rao

Do not ever treat them as patients. Make them morally and mentally strong to face challenges. And be prepared to be surprised by the amazing results I bet they are going to give. It is just the motivation they need. The rest is History.

Thank you for this wonderfully inspirational conversation, Shaheen.


This post originally appeared on on Tue, 10 Nov 2015.