Needs and recommendations for doctors

Doctors play a crucial role in these areas for persons with spinal muscular atrophy (PWSMA) and their caregivers.

While SMA may be considered a rarity by most clinicians, new advances in SMA management, such as the emergence of novel therapies, has escalated the need for SMA education and awareness among all levels of healthcare providers, especially paediatricians and general practitioners.

Living With Spinal Muscular Atrophy in Malaysia: A Study

During diagnosis

Developmental delays need to be recognized early

There is a lack of knowledge and very little attention or urgency given to developmental delay in infants among healthcare professionals, as evident from expressions such as ‘It’s nothing’ and ‘Biasalah (It’s normal)’.

Living With Spinal Muscular Atrophy in Malaysia: A Study

Sensitivity and compassion are crucial when giving the diagnosis

Doctors lack empathy and did not offer much help. The doctor said, ‘Eh, you know or not, your child ah, can’t live long. I can only give you a period of a maximum of two years.’

A father of two children with SMA Type 1

After diagnosis

Multidisciplinary care and collaboration are essential. Among the main areas of concern for persons with SMA and their caregivers are:

Respiratory care

Physiotherapy

Occupational therapy

Nutrition

Orthopaedics

Mental health

Palliative care

Help with referrals for financial aid and resources like SMA support groups

Support groups can provide mutual aid and information-sharing, which enables parents to feel less helpless and more adequate in caring for their children.

Living With Spinal Muscular Atrophy in Malaysia: A Study

Listen to and work with PWSMA and their caregivers

Yes, we understand that the doctors cannot know everything, but try to work with the parents. Trust the parents or listen to what the parents want first. Don’t see our child as a disorder, see our child as a human first.

A mother of a boy with SMA Type 1

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