OF MUSCLE GSD
We are building a series of personal stories from people affected by muscle GSDs. Each story may be just an anecdote, or a life story, or anything in between, usually with photos. We are keen to have ALL our GSDs represented. Would you like to tell your story?
We are keen to have stories from people affected by GSD3a, Cori Disease. If that is you, please get in touch.
We are seeking the first person with GSD3a who would like to share their personal story.
With more people diagnosed with McArdle’s than all other muscle GSDs combined, we obviously have quite a few stories. To join them, please get in touch.
We are very pleased to have a few stories from those with GSD7, and we would welcome more. Please get in touch.
We need personal stories from more people affected by GSD9d. If that is you, we want to hear from you.
Canada, age 5.
AN INCREDIBLY RARE DIAGNOSIS
Everett’s personal story is currently in preparation.
We are keen to have stories from people affected by GSD13, even though it is incredibly rare. If that is you, please get in touch.
We think there may be only about a dozen people worldwide diagnosed with GSD13. We are trying to locate the first one who would like to share their story.
We are very pleased to have a first personal story from someone with GSD15, but we would welcome more. Please get in touch.
CONTRIBUTING YOUR STORY
We would like many more stories, with some for each muscle GSD.
Your story may be just an anecdote, a life story, or anything in between. The only constant is to have: a head and shoulders photo, your name, country, GSD, age at diagnosis, age and date at time of writing.
If you prefer we can set up an on-line interview and we will write your story for your approval. If writing yourself, please aim for a maximum of 800 words. If you have additional photos they would be welcome.
Whilst not ignoring the difficulties that people have, our purpose is to share how people have managed their condition in different ways. The stories should be an encouragement and offer examples of how to manage well.
You can submit your text in Word, a text file or just in an email. Photos should be sent attached to a separate email. For any queries, and to submit your story, please email: firstname.lastname@example.org.