Newly diagnosed? You are not alone.
Hearing the words "spinal muscular atrophy" changes everything. Many of us at Cure SMA India are parents who have stood exactly where you are standing now. This page is the guide we wish we had.
Your first steps
Take a breath — and get the full genetic report
It is normal to feel shock, disbelief, grief or guilt. Nothing you did caused SMA. Ask your doctor for a copy of the complete genetic test report, including the SMN1 result and the number of SMN2 copies. You will need it for treatment, access programmes and support.
Find a neurologist who knows SMA
A paediatric neurologist (or neurologist, for adults) experienced in SMA will confirm the type and plan care. Our SMA clinics bring several specialists together in one visit. We can help you find an SMA-aware doctor near you.
Ask about treatment — early
Treatments that slow or stop SMA now exist, and they work best when started early. Learn abouttreatments available in India and discuss them with your neurologist as soon as possible.
Set up breathing, feeding and physio care
Good supportive care prevents hospital stays and improves quality of life. Read thestandards of care and our guides onbreathing, nutrition andphysiotherapy.
Register with Cure SMA India
Joining the Indian SMA community is free. It lets us support you directly, share news on treatment access, and represent your needs to the government. Register here.
Talk to families who understand
Speaking to another parent can help more than anything else. We will connect you with families who have been through the same journey, and with counselling if you need it.