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      Leah Leilani

      Throughout my life with Muscular Dystrophy, beginning with the geneticist that diagnosed me, I have been fortunate to have doctors that include me in my overall healthcare. From a young age my physicians would turn to me when asking about my symptoms and health. They have always made sure that I am involved when discussing treatment plans.

      My parents have been judged in the past for teaching me too much about my disease. I believe that it is important for a child to know what is going on inside their body and what is being done to it.

      Do you make sure to inform your child about their disease? What are some tips you might have for talking to your child about upcoming procedures or the specifics of their disease? Does your child feel comfortable asking you or their doctor questions? Do you encourage your child to engage in the conversations during appointments?

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