Support and information
As a parent or caregiver, how can I take care of myself?
The most important thing to remember is that you are not alone.
- Reach out to your current support system, such as your family and friends.
- While spinal muscular atrophy is ‘rare’, there is a large global community that can connect you with resources and support.
- Try to take care of yourself. At times it can be easy to overlook (or hard to manage) but your sleep, fitness, and diet, can help fuel the physical and emotional energy you need to take care of your baby.
- Prioritize your mental health. Supports are also available for you and it is OK to ask for help. Reach out to a professional counsellor who is trained to help.
- Receiving a SMA diagnosis in a newborn can be especially difficult. Parents may find this news difficult to cope with. There are organizations that provide support to postpartum parents:
From a parent When our baby was diagnosed with SMA through NBS, we felt like the dreams for our baby were taken away and replaced with uncertainty. Over time, we developed new dreams and hopes – our child will enjoy a huge range of life experiences unique to them and is surrounded by love and friends. It is easy to get lost in a sea of information, feel overwhelmed and lose sight of normal moments. Look for moments of joy, remember to take photos and cuddle your baby.
It is important to know that just like other babies, every child with SMA is different. We recommend discussing information you find with your HCPs to understand how this fits your child and help you make decisions that are right for you and your family.
Links
| Crisis support hotline (AUS) | https://lifeline.org.au/ |
| Advocacy group for people living with neuromuscular conditions (U.S) | https://curesma.org |
| Advocacy group for people living with muscular dystrophy (AUS) | https://mdnsw.org.au/ |
| Advocacy group for people living with spinal muscular atrophy (AUS) | https://smaaustralia.org.au |
| Advocacy group for people living with spinal muscular atrophy (U.K) | https://smauk.org.uk |
| Registry for people with a neuromuscular disease (AUS) | https://australiannmdregistry.org.au |
| Organisastion supporting mental health (AUS) | https://beyondblue.org.au |
| National peak body for Australians living with a rare disease | https://rarevoices.org.au |
| Australian government website for accessing medicare/PBS services | https://servicesaustralia.gov.au |