We have a significant booklet of guidance which is in pilot at present - final version expected in the first half of 2018.
Euromac has a booklet of assistance for primary care physicians who have a McArdle patient under their care.
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Living with McArdle Disease - in pilot
US Royal size, 50 pages
Currently available as a free PDF in it’s pilot version, this booklet is being expanded by another 10 pages and will be entitled “Improving life with McArdle’s”. The final version is expected to be published in the first half of 2018.
There are sections on all the management techniques such as “second wind”, the “six second rule”, “30 for 80”, etc. There is guidance on such topics as starting an exercise program, tackling stairs, guidance for walking partners, etc., etc., etc. A truly comprehensive guide to managing McArdle disease.
McArdle Disease medical overview
1/3rd A4, 20 pages
This booklet is from Euromac, an IAMGSD edition is planned.
McArdle disease needs to be managed by a specialist, but this booklet is intended for doctors in primary care and specialists in other areas who are seeing someone who has McArdle’s. It addresses subjects such as Creatine Kinase (CK) blood tests and what they mean in the context of McArdle’s. There are sections on other lab results, alerts for dangers, and a section on emergencies. All patients should give one to their primary care doctor and hold one themselves to have available on any other medical appointments and if ever attending hospital with rhabdomyolysis.