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A major innovation in the dietary management of glycogen storage disease (GSD)

charlie-lynn

Charlie Lynn

Moments:
Charlie Lynn

Charlie LynnCharlie Lynn was diagnosed with Type 1A GSD when he was eight months old. Now, an active teenager, Charlie and his mom, Susan Schwartz, look back at his initial diagnosis and how Glycosade has changed his life. “Charlie’s GSD had an enormous impact on our family,” said Susan. “We were always concerned that his pump would fail in the middle of the night and that he wouldn’t get a dosage.”

When Charlie was first diagnosed, his parents had never heard of GSD and were unfamiliar with the disease. They sought out experts and did their own research to learn more about GSD. Upon becoming more familiar with the disease and learning about the patient community, they quickly found that other parents of children living with GSD were great resources and very well informed.

“Talking to other parents really helped us because they could share their first-hand experiences with managing GSD,” said Susan.

Charlie is now 17 and an active, competitive baseball player. He started using Glycosade in August 2012. The initial trial was challenging, but Charlie worked closely with his doctor and his everyday life has benefited greatly from Glycosade. “Glycosade has made it easier for me take care of myself, so I am more independent now,” said Charlie. “I’m also able to get more sleep since I’m not waking up in the middle of the night for a dosage.”

As an active baseball player, Charlie uses Glycosade “on the go” and takes it with him everywhere he goes, even baseball games.

Susan now has her own advice for parents of children who have been diagnosed with GSD.

Advice for Parents of Newly Diagnosed Children: Take everything day by day and try not to get overwhelmed by the big picture.

“Try not to think about the big picture because that can be really overwhelming,” said Susan. “There are so many challenges, but it’s easier to take it day by day and appreciate each day.”

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