Mother helps carry Siti Hawa through demanding PhD journey, while dealing with rare genetic disorder

Dr. Siti Hawa Apandi, a 37-year-old woman living with the rare genetic disorder spinal muscular atrophy (SMA), has broken barriers in Malaysia by becoming the first SMA patient to complete continuous higher education studies from a single university. Dr. Apandi, who began her academic journey at the diploma level and ultimately earned her Doctor of Philosophy (PhD) from Universiti Malaysia Pahang Al-Sultan Abdullah (UMPSA), credits her mother for her success.

The SMA, which damages motor nerve cells in the spinal cord and brainstem, causes progressive muscle weakness and wasting, affecting basic movements like walking and swallowing. An estimated 1 in 10,000 to 20,000 live births in Malaysia are affected by this rare disease, with between 20 and 30 new cases detected annually. Dr. Apandi's mother, who accompanied her through her studies at UMPSA from 2007 until 2025, played a crucial role in her journey.

SMA Malaysia describes SMA as a condition that Malaysia has yet to establish a comprehensive national database for. Despite mobility challenges and financial constraints, Dr. Apandi demonstrated remarkable perseverance, excelling academically and securing top honors in her fields. Her dedication ultimately led to her successful completion of her PhD in 2025, a milestone made even more impressive given the additional respiratory complications arising from her condition.