Our worries and wants
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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.
When asked to indicate what would be the most important outcome for a possible drug treatment, providing gains in function, such as increased strength and energy, and being able to do something the PWSMA was unable to do before, were the most important outcomes for both PWSMA and caregivers.
Living With Spinal Muscular Atrophy in Malaysia: A Study
Crucial treatment areas
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
Access to disease-modifying treatments and clinical trials
Access to holistic post-diagnosis care, including:
1. Palliative care support.
2. Professional mental health counselling.
3.Respite care.
4. A support group.
5. Personal assistants for adult PWSMA.
Help from the Government to:
1. Increase awareness about SMA.
2. Improve accessibility for ease of movement for PWSMA, to education and employment, as well as to promote societal inclusivity for PWSMA.
3. Improve medical care services for SMA, e.g. subsidise or reimburse treatment costs.
Cough assist machine (CAM) has often enabled me to do my daily activities without being distracted by phlegm. Before I had started to use CAM, I was frequently struggling with phlegm in the morning as I always wake up with phlegm in lungs... Since I began to use CAM, I have been able to cough out my phlegm in the morning. It has assisted me to clear my lungs before I start the day... All in all, CAM has improved my lifestyle.
A man in his 20s with SMA type 2
Rehabilitation and orthopaedic care
Rehabilitation goals differ according to the different types of SMA and the course of the disease, but these goals should also depend strongly on the patient’s and family’s wishes... Some of these goals include optimisation of function, minimisation of impairment and prevention of contractures and scoliosis.
Living With Spinal Muscular Atrophy in Malaysia: A Study
Palliative care
I think palliative care is very, very important. The palliative team needs to come in and talk to the parents. Even if I know my child is going to pass on, what is the best I can do during this period? ... We have cases where parents who are given palliative consultation and all that, feel like, ‘Okay, I have done my best, it’s okay. That is the journey my child … will finally go on.’ If the parents are given that kind of counselling, besides genetic counselling, it gives a very good feeling, as if you are prepared, you have tried your best.
A mother of a boy with SMA Type 1
For caregivers, respite care is also crucial.
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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