In welchem Alter wurde bei Ihnen die Diagnose gestellt?
9

Was ist Ihre größte Errungenschaft?
My greatest accomplishment is continuing to live an active and meaningful life despite LGMD. I’m building strong relationships, adapting to challenges, and maintaining my sense of purpose and humor through it all.

Was waren Ihre ersten Symptome?
My body was always hurting

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?
LGMD has made me more patient, resilient, and appreciative of the small victories in life. It’s taught me to problem solve daily, advocate for myself, and value the people who truly show up and support me.

Haben Sie andere Familienmitglieder, die an LGMD leiden?
Nein

Was möchten Sie der Welt über LGMD mitteilen?
I want the world to understand that LGMD is often invisible at first, but it deeply impacts strength, mobility, and energy. People with LGMD are still capable, driven, and full of life. They just navigate the world differently and deserve accessibility, respect, and understanding.

Was sind für Sie die größten Herausforderungen im Leben mit LGMD?
The greatest challenges are the gradual loss of strength and independence, and adapting to changes in mobility over time. Everyday tasks that used to be simple now require planning, support, or adaptive equipment. There’s also the emotional side of learning to adjust while still trying to live fully and not let the condition define everything.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie dann als Erstes tun wollen?
I would want to experience freedom of movement again. Walk, travel more easily, and do everyday things without needing to think about limitations or fatigue. I would pick my son up and carry him. Be a “normal” dad.