Strengthening support for MG patients

As a parent living with Myasthenia Gravis, Sylwia often felt powerless and heavily dependent on others, particularly during the years it took to receive a diagnosis. Yet, she transformed those hardships into a source of strength.

For Laura, growing up with a mother battling MG was deeply unsettling. She recalls feeling helpless from the beginning, explaining, “As a child, I couldn’t do anything to help my mother.” Watching her confined to bed, unable to move, felt like the end of the world, a paralysing experience no child should face without support. 

Sylwia believes that parents living with this illness should not avoid difficult conversations . “If we accept the illness and how it affects our lives,” she explains, “it will be easier for us to fulfil our role as a parent and any other role.” Openly discussing what their body is going through helps children confront the illness directly. Children are incredibly perceptive and can sense dishonesty. Instead, parents should tailor the information to their child’s age, ensuring it is understandable without being overwhelming.