INDIVIDUAL WITH LGMD: Tell

Nome: Tell
Idade: 26
País: Estados Unidos
LGMD Sub-tipo: LGMD 2C / LGMD R5 y-sarcoglycan-related
Com que idade foi diagnosticado?
9
Qual é a sua maior realização?
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.
Quais foram os seus primeiros sintomas?
My body was always hurting
Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?
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.
Tem outros familiares que sofrem de LGMD?
Não
O que é que quer que o mundo saiba sobre a LGMD?
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.
Quais são, na sua opinião, os maiores desafios de viver com a 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.
Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?
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.






