LGMD “SPOTLIGHT INTERVIEW” by Osman who lives with LGMD2D/R3
Limbgirdle.com
For some people, receiving a diagnosis of LGMD can take many years. for Daneal, whose symptoms began in childhood, it took more than three decades—long after her teaching career had begun—to learn that she lives with limb-girdle muscular dystrophy. she shares her thoughts about the journey.
“My life is frail, but I want it to be full, I don’t want it to be ordinary, I want it to be extraordinary and for that I need help. I have someone helping me 24/7.”
Leading up to Rare Disease Day, we're raising awareness of the 300+ million people living with a rare disease. People like Shanna, who has LGMD2C or LGMDR5. Watch and share her story to raise awareness.
When I found about about my disease I remember thinking that my life was over.
