Receiving the Diagnosis
A diagnosis of SMA should be given sensitively, in person, by a geneticist or neurologist. During this first meeting the discussion should include:
- What has caused the condition
- How the condition usually progresses
- How it is likely to affect your child with SMA or you as an adult with SMA and the impact this may have on the family
- What, if any, treatment options are available
- Discussion about appropriate symptom management options.
It’s especially important that psychological and emotional support is provided at this time, as well as in the future.
The doctor giving the diagnosis should also inform the family doctor and local medical team about the diagnosis and advise them about the correct management of SMA.