Insights in Thalassemia: From Genomics to Clinical Practice

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Background

IN LOVING MEMORY of Dr. Zarina Abdul Latiff.

Thalassemia is a genetically heterogenous group of hemoglobinopathy disorders, characterised by imbalanced production of the α-globin or β-globin subunits of hemoglobin.

Although the causative genotype is a key determinant of disease severity, the clinical spectrum and phenotype are affected by secondary and tertiary genetic modifiers. The public health and clinical burden of the disease is apparent with 1.5% of the global population being carriers and an estimated 400,000 affected births annually, with the majority in lower-middle-income countries. Although diagnostics and clinical management have evolved over the last decade, there is still much to be addressed in terms prevention, utility of molecular diagnostics, treatment outcome and quality of life.

The objective of this Research Topic is to provide insights into the multifaceted approach required for the management of thalassemia from a public health perspective, screening and diagnosis, clinical management and therapeutics as well as the psychosocial impact of the disease as a whole. Submissions of original research and review articles are welcome.

IN LOVING MEMORY

15th October at 7.50.pm I received a call which I dreaded. The passing of Professor Dr. Zarina Abdul Latiff. Although I expected the ending it was still devastating.

The pediatric fraternity, especially UKM lost a gem of a Professor, our dear beloved Professor Dr. Zarina Abdul Latiff. This could not happened too soon, as we lost another eminent Professor Dr Syed Zulkifli recently. Zarina had been battling cancer for some years and succumbed to it. Despite a devastating diagnosis, Zarina endured it like a true superhero with her courage, poise and SABRAN JAMEEL (a beautiful patience)

I got to know Zarina when she joined the Master Pediatrics programme. I was initially envious of her- here is a person who has beauty, intelligence good demeanor and wealth( every person's dream to be) I thought that she entered the programme based on the connection she had, rather than actual process all the potential candidates had to go through. However she proved me wrong. She truly deserved to be in the programme. Working with her she demonstrated to be a genuine and dedicated doctor who thrived in giving her utmost best to the pediatric population.

The envy turned into admiration and pride that I had the opportunity to have worked with a person of such caliber. Her passion to achieve knowledge and skills in pediatrics had no boundaries.

She single handedly set up Master in Genetic Counselling, despite many obstacles. She enlisted Clinical geneticist and counsellors to be the providers in the course. And to date the the programme has produce fifteen Genetic Counsellors.

We worked together in planning and setting up the new children hospital (HPKK), toiling day and night providing ideas and vision to achieve a state of the art hospital providing the most current evidence based medicine to the children in a safe and child friendly environment. It took a lot of 'battles' to put forth the ideas. As a head of department of pediatrics, she strived and inspired all the members to work hard and achieve the vision and mission of HPKK.
Then came the devastating diagnosis and she took a break and underwent treatment. She returned with fierce determination to achieve more and not let the disease deter her. She was conferred Professor, sits in the ethical Committee for research. Due to her ability she was appointed as the Deputy Dean for Post Graduate studies. With each given responsibility and trust, she accomplished greater heights and improved the department under her leadership. She brought forth needed changes and improvement in the post-graduate committee where assessment and decisions were made more transparent. The PhD programme were streamlined made more focused. She had help from a team of competent members who were only delighted to work under her leadership.
All these were achieved despite her disease relapsed and she was under treatment. She endured it with sabran jameel, and never once she let the disease dictate or deterred her from accomplished what she was destined to achieve.
She was fortunate to have true friends to help her overcome her pain and gave her strength during her trying and difficult period.
In the the last few weeks of her life when the disease took a relentless course, I was honored to be given some time with her to help ease her pain. During this time I got a glimpse of her life before I met her. She was reminiscing of the happy times. Truly it was a memorable moment and what a delightful person Zarina was.
We have lost a great treasure, a person as Zarina, a filial daughter to her parents, a dedicated and strong mother to her daughter, a dazzling personality to her friends, an inspiring lecturer to her undergraduate and post- graduate students, a brilliant researcher and an influential teacher and leader.
Professor Dr. Zarina Abdul Latiff, your demise have left a massive void and is irreplaceable. You will be sorely missed everyday. We will keep your memory alive and make continuous doa for you.
We pray that all your sins were forgiven, and that you are place among the righteous, shuhada and solihin. May your current abode be Taman- taman Syurga
And we pray that we will meet again in Jannatul Firdaus, our eternal abode. AAMEEN.

TIME DOES NOT HEAL ANYTHING, IT JUST TEACHES US HOW TO LIVE WITH THE PAIN.

Keywords: thalassemia, genomics, diagnosis, phenotype, clinical, therapy, quality of life

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