Your Medical Team
Whatever the impact of your SMA, the International Standards of Care for SMA (SoC) for those with 5qSMA (Types 1, 2, 3 or 4) recommend that your overall care should be guided by a specialist neuromuscular clinic and other relevant specialties. Depending on your needs, these may include specialists in:
- Breathing (respiratory specialists)
- Nutrition (gastroenterology and dietetics specialists)
- Bones and muscles (orthopaedic specialists)
- Rehabilitation (physiotherapists and occupational therapists)
These specialists, and any others, should be working together as a multidisciplinary team who not only think carefully about your medical needs but also think about - and are respectful of - any social, cultural and spiritual needs you and your family may have.
If you’re a non-sitter or sitter (the terms they use in the SoC), your team may also include specialists in palliative care who have expertise in the controlling complex symptoms. Don’t panic! Although you might have heard that term used to mean end of life care, in practice it has a much broader focus and is about supporting someone’s physical, emotional and practical needs from the point of diagnosis onwards.
Palliative care services are relevant for anyone who has a condition that makes getting ill much more challenging to manage than if they didn’t have that condition to cope with as well. It’s also there to help to make sure that your treatment choices are ones that fit with things you want to do and how you want to live your life. It’s there to provide you with help to overcome any challenges you face and is complementary to (not instead of) the other medical support you have.
For a more complete list of possible specialists you might meet and what their role is, have a look at: Who’s Who of Professionals.
Last reviewed: August 2021
Next review: August 2022