What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: Feb 17, 2020.

Please donate online to support our work.

Register with us for special access to the web site, download PDFs and be kept in touch by email.

PRESENTATIONS – MANAGEMENT

Presentations on the management of muscle GSDs.

Patient Advocate

Terri Chambers

Advocacy and McArdle disease

AGSD US Conference

September 2019

It is so important to be able to advocate for yourself, or have a family member do it for you.

IamGSD President

Dr Stacey L Reason

Understanding McArdle disease

AGSD US Conference

September 2019

What it is, what happens, “second wind”, symptoms, impact and management strategies.

AGSD-UK McArdle Coordinator

Andrew Wakelin

Patient Liaison Panel report, UK McArdle Clinic

AGSD UK conference

October 2019

Report on the clinic and the research programme at the UK McArdle Disease Service, London.

slides-pain-what-pain.png

McArdle Coordinator
AGSD-UK

Andrew Wakelin

Pain? What pain?

AGSD US Conference

September 2019

Avoiding and managing pain in McArdle disease. Pain is not a given part of the condition.

AGSD-UK McArdle Coordinator

Andrew Wakelin

Top Tips

AGSD US Conference

September 2019

Key underlying factors, immediate ATP, the four Rs, “second wind”, the 6-second rule, 30 for 80, rest before risk and the McArdle Mantra

IamGSD President

Dr Stacey L Reason

Adverse Events: Management and Recovery

IGSD2017 Conference

June 2017

The causes, treatments, risks and outcomes of an episode of rhabdomyolysis. 

McArdle Coordinator
AGSD-UK

Andrew Wakelin

Walking with McArdle’s – from 2010 to now

IGSD2017 Conference

June 2017

An account of the development of the walking courses over the last 7 years, with some great photos. It covers the successes and the benefits, plus the start of the Children & Parents event.

IamGSD President

Dr Stacey L Reason

Fuelling our muscles: carbohydrate, protein, healthy fat.

AGSD US Conference

September 2019

An introduction to each macro nutrient and encouragement to see what works for you.

slides-what-doctors-know.png

McArdle Coordinator
AGSD-UK

Andrew Wakelin

What can patients know better than doctors?

IGSD2017 Conference

June 2017

Patients have first hand experience of the condition, they understand it from a practical viewpoint.