From isolation to community

A Myasthenia Gravis diagnosis can be isolating, straining relationships and friendships. Sasa Ciber from Slovenia experienced this firsthand. “When I was first diagnosed with Myasthenia Gravis, my world fell apart,” she recalls. “It was really hard for me to accept that something was wrong with my body and that my life would now be different, suddenly limited.” At her lowest point, overwhelmed by symptoms, she felt completely alone and misunderstood. Accepting the diagnosis was not easy. It meant rebuilding herself from scratch.

Everything changed when she joined a Myasthenia Gravis patient association. There, Sasa found a supportive community and made friends with people who truly understood her. Together, they now work to raise awareness and educate families and friends about the challenges people affected by MG face, giving more visibility to a rare illness and the impact it has on lives.

Noise-reducing helmets simulate hearing discomfort, while prismatic glasses disrupt the brain's ability to merge vision from both eyes. Weighted vests add pressure to the chest and shoulders, making simple movements feel exhausting, and an impairing necklace restricts swallowing, simulating dysphagia. Through these simulations, participants experience the daily challenges of muscle weakness, sensory disruptions, and physical limitations. The usual reaction? "Why didn’t you tell us?" To which, Sasa replies: "I did, but you didn’t understand because nobody fully understands until this happens to you."