Coming up:

 IGSD Conference,
The Netherlands,
15-17 June 2017.

 

 Walking with McArdle's course,
 North Wales,
 2-9 August 2017.

 

 AGSD-UK Annual Conference,
Nottingham,
28-29 October 2017.

 

What happens at the McArdle Clinic?

We hope that you will find it useful to meet other people with McArdle disease as well as benefiting from the medical attention you receive.



Appointments
Important note: if you cannot make an appointment please advise the clinic at least 4 days in advance so that someone on the waiting list may be invited. Unused appointments threaten the future funding of the clinic.

Timings
Every one is given the time they need on each session. Appointment times are staggered to avoid a lot of waiting, but you may be at the clinic for a large part of the day. Each individual may need a different amount of time with the various team members. We try to keep waiting times between sessions to the minimum but sometimes a delay is unavoidable.

Sessions to complete

  • Dr Ros Quinlivan, neuromuscular consultant.
  • Blood tests - Blood tests are taken to monitor Creatine Kinase, kidney function and uric acid.
  • Weight and height - We use these figures to calculate your Body Mass Index. Control of weight is important as excess weight exacerbates the symptoms.
  • Electrocardiogram (ECG) – Heart involvement is not a documented feature of McArdle disease but we do this as part of a general health check.
  • Dietician - Dietary assessment and advice provided by the dietician.
  • Exercise physiologist – You will have a twelve minute walking assessment on a treadmill. This gives us a method of assessing you and can help teach people how to achieve ‘second wind’.


Footwear and clothing
Please wear comfortable shoes and loose fitting clothing suitable for the exercise assessment.

Follow up appointments
Patients are normally seen every 1-2 years, but this may vary according to your needs. The clinic is held approx 20 times per year.

Association for Glycogen Storage Disease
The AGSD-UK works closely with the clinic and a representative usually visits the McArdle clinics on a voluntary basis, to provide information about the Association, and to help interested patients/families to meet each other in an informal atmosphere.

Questions
If you have any questions please do not hesitate to ask the clinic’s specialist nurse, or contact Dr Quinlivan’s secretary.

 


Updated: 8 May 2013