Our worries and wants

These are the worries and concerns, as well as the hopes and wants, of persons with spinal muscular atrophy (PWSMA) and their caregivers.

Worries and concerns

Losing their independence or never being able to be independent
Losing their functional abilities
Not being able to lead a normal life
Unable to join in social activities due to lack of accessibility
Lack of employment opportunities
The high cost of raising a child(ren) with SMA
Decreased mental and emotional health due to:

Loss of sleep and stress
Feelings of frustration and hopelessness
Feelings of uncertainty and anxiety
Depression and loneliness
Feelings of grief and sadness

Facing premature death, which includes:

The fear of dying or your child dying
Preparing to die
Living a meaningful life
Facing difficult treatment choices

Hopes and wants

Access to disease-modifying treatments and clinical trials

Access to holistic post-diagnosis care, including:

Palliative care support
Professional mental health counselling
Respite care
A support group
Personal assistants for adult PWSMA

Help from the Government to:

Increase awareness about SMA
Improve accessibility for ease of movement for PWSMA, to education and employment, as well as to promote societal inclusivity for PWSMA
Improve medical care services for SMA, e.g. subsidise or reimburse treatment costs

People are not disabled by their medical condition, but rather the attitudes and structures of society, says the social model of disability. When these barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.

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