Counseling is an essential component of support for families of patients with spinal muscular atrophy.
The diagnosis of SMA results in life-changing circumstances. Families can feel extremely stressed, worried, and frustrated throughout the diagnostic journey.
Parents often react initially with shock, disbelief, or denial. Acceptance of the diagnosis follows and many parents, especially mothers, feel guilt at having “given” this disorder to their baby. They are confused and frightened for their child regarding their development and future. Many parents typically feel isolated by these feelings.
At Cure SMA India, we counsel parents to facilitate their acceptance of the child’s diagnosis and adjust their expectations and lifestyle to take care of the child’s needs. The typical symptoms and course of SMA are explained. We build hope by referring to experiences of other SMA children and their parents who are dealing with similar challenges.
From helping to uncover a diagnosis and finding the right doctors and treatments to learning about everyday coping tips and connecting them to similar families, we provide the tools and resources needed to face the challenges of living and thriving with SMA.