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PERSÖNLICHE GESCHICHTEN 

Wir sammeln persönliche Geschichten von Betroffenen einer Muskel-GSD. Die Geschichte kann eine Anekdote, eine Lebensgeschichte oder etwas dazwischen sein. Sie kann auch mit Fotos illustriert werden.
GSD3a

GSD3a CORI

We are keen to have stories from people affected by GSD3a, Cori Disease. If that is you, please get in touch.
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GSD3a story 

We are seeking the first person with GSD3a who would like to share their personal story. 

Coming soon
GSD5

GSD5 MCARDLE

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Lucy Smith

UK, age 8.

WHEELCHAIR TO WALKING
A mother’s account of early childhood problems, diagnosis, progress and sharing with other McArdleites and their mums. 

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Sioned Williams

UK, age 66.

MY STORY OF A CAREER WITH GSD5

Navigating music college, performing with major orchestras, teaching, and recording for radio and television – with McArdle’s. 

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Carol Hassall

UK, age 72.

THREE COMPOUNDED DIAGNOSES

Diagnosed at 28, put in a wheelchair, no guidance till 40. Now doing so much better.

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Deborah Corcoran

UK, age 54.

HIKING MACHU PICCHU IN PERU

Diagnosed at 33, a heart attack, then got fit to hike the mountains in Peru.

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Holly Goodwin

USA, age 44.

MCARDLE’S IN EVERYDAY LIFE” PHOTO SERIES

Diagnosed at 33. A photo essay exploring what it is like to live with McArdle’s.

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Irene Garton

USA, age 17.

APPLYING SECOND-WIND
Learning about second-wind and applying it to life.

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Aidan Fernandez

USA, age 12.

A VERY POSITIVE ATTITUDE

Diagnosed at 8, Aidan has taken control and shares his advice on living with McArdle’s as a 12 year old.

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Hans Meißner

Germany, age 20.

LEARNING HOW TO MANAGE

Diagnosed at 14, little advice, bad episodes of rhabdo but now learnt how to manage.

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Anonymous

USA, age 20.

INCREASED ACTIVITY PAYS OFF

Diagnosed at 14 and then learning on a walking course later in the same year.

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Bronte Thomas

UK, age 22.

FROM DIFFICULT DIAGNOSIS TO HELPING OTHERS

After diagnosis struggling almost more than before, but then finding her way and now doing well, and passing it on to others..

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Gary McLellan

UK, age 57.

MY ADVENTURES IN 2019

In 2019 Gary rode his bike 190 miles to his McArdle clinic appointment. And had a 3-week backpacking trip to Myanmar.

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Feike Dirks

Netherlands, age 66

MY ONE STEP AT A TIME

Very late diagnosis at 60, lots of damage done. Learnt so much from the walking course.

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Melanie Graves

US, age 54.

THREE UNUSUAL EXCEPTIONS

In many ways a typical history, but with three unusual exceptions from the norm.

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David Tompson

UK, age 57.

THREE PEAKS CHALLENGE

Planning and preparing for a McArdle’s group attempt on the UK Three Peaks Challenge”.

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James & Ned  Duggan

Australia, age 16.

ISOLATION AND CONFUSION GRADUALLY CHANGED

Many rhabdos after diagnosis at age 8, then finally getting to the walking course in Wales.

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.

GSD7 TARUI

We are very pleased to have a few stories from those with GSD7, and we would welcome more. Please get in touch.
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Susan Edgerley

USA

Alter 59

GSD7 Tarui

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Susan Edgerley

USA

Alter 59

GSD7 Tarui

GSD9d

We need personal stories from more people affected by GSD9d. If that is you, we want to hear from you.
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Everett Leighton 

Canada, age 5.

AN INCREDIBLY RARE DIAGNOSIS

Everett’s personal story is currently in preparation. 

Coming soon
GSD9d
GSD7

GSD13

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.
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GSD13 story 

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. 

Coming soon
GSD13
GSD15

GSD15

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Fernando Neito

Spain, age 44.

MY ULTRA RARE CONDITION

IamGSD knows of only 4 cases of GSD15 worldwide. Profound depletion of glycogen in the heart and the skeletal muscle. 

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.
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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: webmaster@iamgsd.org.

Contributing
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