15th April 2015

International Pompe Day

 

Pompe Update

Healthcare at Home

Deliveries Statement

 

GSD Giant 2015 

Annual cyclo-sportive.

6th September 2015

The Petersfield School

100, 64, 32 mile options

 

GSD Giant website
  

 

The McArdle Disease Handbook

Also available here - “101 Tips for a Good Life with McArdle Disease”

"The Handbook is the best thing to happen for all McArdle sufferers since their diagnoses. It is an impartial review that everyone should read."
Ian MacDougall, B.Sc.(Pharm), Canada

"Researching McArdle's online, people's experiences are eye-opening, but after a while they become repetitive or contradictory. Medical information is either anecdotal or unintelligibly scientific. You read about a possible treatment and then find it was abandoned years ago. The Handbook pulls all this together, filters out the irrelevant, repetitious and out of date, then presents it in an understandable and generally unambiguous form. If only it had existed when I was a kid."
McArdle patient, London

A guide to the scientific and medical research into McArdle Disease explained in plain English

First published August 2011, version 1.1 published October 2011, ISBN 978-0-9569658-1-3
208 pages, A4, paperback, AGSD-UK.

Kathryn Birch Ph.D. has researched and written this handbook which explains, in layman's terms, the cause, method of inheritance, history, and current and future treatments of the disease.

The handbook puts into plain English the published information about McArdle Disease which is normally written in technical language as it is aimed at medical or scientific professionals. Some sections are necessarily still rather technical, but in general the handbook should be understandable to people without any medical or scientific training. It is fully referenced to the source publications.

Each chapter has an introduction which summarises the coming pages as simply as possible. Then more detail is given in the main text, using slightly more technical language.

The handbook has chapters on:

  • Symptoms and diagnosis
  • Genetics
  • Exercise, muscle contractions and cramps
  • Muscle damage, raised CK, myoglobinuria
  • Sources of energy in muscle cells
  • Dietary supplements
  • The effect of age on symptoms
  • Differences in severity of symtoms
  • Mental and emotional aspects
  • Sexual activity, pregnancy and birth
  • Factors which may be a greater risk for McArdle people
  • Possible increased risk of other diseases
  • McArdle specialists and family doctors
  • Models of McArdle's to test future treatments
  • Potential therapies
  • How to use the Handbook.
  • Glossary; list of references and index.

 

We are very grateful to Kathryn who has put in a huge amount of work to achieve this very helpful reference source for anyone affected by, or interested in, McArdle Disease. The handbook is the copyright of Kathryn Birch, 2011 and is published by AGSD-UK. You can read more about Kathryn's qualifications and experience which suited her to this task, and about the start of the handbook project, here.

Quantity Book only Including post and packing
Postal area: UK Europe RoW†
 1 copy  £7.50  £11.00  £15.00  £20.00
 2 copies  £15.00  £20.50  £26.50  £35.50

Rest of the World.

£1 Sterling = approx. $1.60 US.

Order using our on-line form and pay by credit card, debit card or PayPal account.
 

If you wish to order more than 2 copies, these are available at the basic book cost plus post and packing costs. Please contact the Type 5 Co-ordinator via the 'Contact Us' page for a quotation.


Electronic versions

On-line: the Handbook is available for searching and viewing on Google Books, free of charge. Obviously it is much less convenient than having a printed copy but it does mean that anyone with web access can look up a subject they are interested in and read the relevant pages/s. Go to Google Books and search for 'McArdle Disease Handbook', or simply click on this link. You can then use the search box, or the drop down contents list near the top right of the page. Then scroll through the chapter page by page.

PDF: a PDF copy can be made available for your personal use only in return for a donation, guideline £5. Please contact the Type 5 Co-ordinator via the 'Contact Us' page.


Version history

Version 1.1 (published October 2011) is the same as Version 1 (published August 2011) but with the addition of an index. The index to Version 1 is available as a PDF file. Click here to download.


Corrections and clarifications

We have a page for any corrections and clarifications which we feel are warranted. So far there are very few, but please take a look at this page.


Other language versions

German edition, 12 Euros, plus shipping, please email Norbert Eckelmann.
Italian edition available for download as a PDF from the AIG web site.
There are also plans by the Spanish and French associations for glycogen storage disease to produce versions in their respective languages. To enquire about availability please contact the Spanish or French associations directly. For permission to translate into other languages, please contact the Type V Co-ordinator via the Contact us page.


 

The AGSD-UK is grateful to the Vodafone Foundation's "World of Difference" programme, which allowed the grant winner to prepare this handbook. Visit the Vodafone World of Difference web site.

 


Updated: 07/04/2013