Cure SMA India – Hope Beyond Boundaries

Emotional support

SMA affects the whole family. Looking after your own and your family's emotional wellbeing is as important as physical care.

Last reviewed 2021 (content from the previous website — review pending)

Key points

  • Shock, disbelief, guilt and isolation are normal reactions to a diagnosis.
  • Talking to other families who understand can help enormously.
  • Carers need care too — ask for help and take breaks.
  • Our counsellors and parent network are here for you.

After a diagnosis

A diagnosis of SMA brings life-changing circumstances. Families can feel extremely stressed, worried and frustrated throughout the diagnostic journey.

Parents often react first with shock, disbelief or denial. Acceptance follows, and many parents — especially mothers — feel guilt at having “given” the condition to their baby. They are confused and frightened about their child’s development and future, and many feel isolated by these feelings.

No one caused their child’s SMA. It is inherited from two parents who almost always had no way of knowing they were carriers.

Family counselling at Cure SMA India

We counsel parents to help them come to terms with their child’s diagnosis and adjust their expectations and lifestyle to their child’s needs. We explain the typical symptoms and course of SMA, and we build hope by sharing the experiences of other children with SMA and their parents who are dealing with similar challenges.

From uncovering a diagnosis and finding the right doctors and treatments, to everyday coping tips and connecting with similar families, we provide the tools and resources to face the challenges of living — and thriving — with SMA. Contact us to talk to a counsellor or a parent.

Common challenges

People with SMA and their carers can face:

  • Limits on social life — weakness, fatigue and fear of infection can mean spending a lot of time at home, which can lead to frustration and loneliness.
  • Worry about the future — about health, treatment costs, schooling and independence.
  • Carer exhaustion — round-the-clock care, night-time breathing support and hospital visits are physically and emotionally draining.
  • Strain on relationships — between partners, and with brothers and sisters who may feel left out.

Looking after yourself

  • Share the care. Train other family members so the main carer can rest.
  • Keep routines for sleep, meals and some time for yourself.
  • Stay connected — with friends, relatives and other SMA families, including online.
  • Ask for help early if you feel low, anxious or overwhelmed for more than a couple of weeks. Speaking to a counsellor or doctor is a sign of strength.

Supporting your child

  • Encourage play, learning and friendships — SMA does not affect intelligence.
  • Talk honestly with your child, at their level, about their condition.
  • Help them do as much as they can for themselves; independence builds confidence.
  • Include brothers and sisters, and make time for them too.

Community

Hearing stories from SMA warriors and their families — how they deal with the condition and grow stronger — can be uplifting. They show that disability need not stand in the way of success. Read our stories, and follow Cure SMA India on social media to join a thriving online community.

Our regional meetings bring families together in different cities with specialist doctors, so families can learn, share their feelings and day-to-day problems, and feel that they are not alone on this journey.

See also the mental-health section of our COVID-19 guidelines.