Page 1:

At hospital

with McArdle’s

Information for emergency visits

When to seek urgent medical attention.
Guidance for assessment and management.
References to Clinical Practice Guidelines [1].

Triage needed

• Patient is likely to report with severe muscle cramping or contracture/s and extreme pain [2].

• May develop rhabdomyolysis [3], myoglobinuria and a risk of Acute Renal Failure [4], with severe episodes requiring dialysis.

• Risk of Compartment Syndrome [5] requiring urgent surgical intervention to relieve pressure.

Introducing McArdle Disease

• McArdle disease (Glycogen Storage Disease 5) is an ultra rare genetic metabolic myopathy.

• Myophosphorylase is deficient, so glucose cannot be released from muscle glycogen.

• A severe energy crisis arises early in all physical activity and throughout isometric and anaerobic activity.

• If patient is well managed, urgent medical care is rarely needed. However, patients can make mistakes or be caught out by circumstances.

NEWS

NEWS

September 2021

AGSD US CONFERENCE

Please refer to the vaccine distribution plan for your country/local region.

To the best of our knowledge, there is no reason why COVID-19 vaccines should cause any particular issue to someone with a muscle GSD. Please consult your primary physician for individual guidance.

Held virtually due to Covid, the dates were from Sept 10, registrations closed Sept 15. For those who registered all

presentations remain available until October 31. For everyone else our five presentations remain available on our Youtube channel.

May 2020

COVID-19 VACCINATION

November 2020

JOIN THE CORDS REGISTRY

IamGSD woud like everyone with a muscle GSD to join the CoRDS Registry which has a special section for us (those in Europe the Euromac Registry). Please read about CoRDS, listen to the podcast and then join the registry on-line.