AGSD-UK Conference 2010

The Conference will be in central London on weekend of 20th-21st November. More details soon.

 

Walk over Wales... every step counts
 2 July to 2 August 2010
Sponsored walk raising money for AGSD-UK. 210 miles. Details.

 

Walking with McArdle's - Wales
An opportunity to enjoy a week's walking holiday in Snowdonia and learn how best to cope with McArdle's. July 2011. Details.

 

 


 

AGSD-UK Conference 2010

The Conference will be in central London on weekend of 20th-21st November. More details soon.

 

Walk over Wales... every step counts
 2 July to 2 August 2010
Sponsored walk raising money for AGSD-UK. 210 miles. Details.

 

Walking with McArdle's - Wales
An opportunity to enjoy a week's walking holiday in Snowdonia and learn how best to cope with McArdle's. July 2011. Details.

 

 

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.


Timings
Every one is given the time they need on each session. You may be at the clinic until lunchtime, sometimes into the early afternoon. Arrival times are slightly staggered to avoid an early rush. As each individual needs a variable amount of time the most efficient approach is to allocate people to team members as each becomes available. We try to keep waiting times between sessions to the minimum but sometimes a delay is unavoidable.

Sessions to complete

  • Dr Quinlivan or Dr Short.
  • Urine sample - Urine is screened for myoglobin (a sign of muscle breakdown).
  • Blood tests - We try to take these in clinic but you may have to go to another department of the hospital. 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 feature of McArdle disease but we do this as part of a general health check.
  • Dietician - Dietary advice, including an assessment of protein intake, is 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 develop a second wind.


At times there will also be opportunities to see the Neuromuscular Physiotherapist.

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

Repeat appointments
Patients are normally seen every 1-2 years, but this may vary according to your needs. The clinic is held only 4 times per year, so new patients may have to wait a few months before being seen.

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.

Tea and coffee
Free tea and coffee are provided by AGSD (UK) - please help yourself from the trolley.

Questions
If you have any questions please do not hesitate to ask at the clinic’s reception desk.

 

 

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.


Timings
Every one is given the time they need on each session. You may be at the clinic until lunchtime, sometimes into the early afternoon. Arrival times are slightly staggered to avoid an early rush. As each individual needs a variable amount of time the most efficient approach is to allocate people to team members as each becomes available. We try to keep waiting times between sessions to the minimum but sometimes a delay is unavoidable.

Sessions to complete

  • Dr Quinlivan or Dr Short.
  • Urine sample - Urine is screened for myoglobin (a sign of muscle breakdown).
  • Blood tests - We try to take these in clinic but you may have to go to another department of the hospital. 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 feature of McArdle disease but we do this as part of a general health check.
  • Dietician - Dietary advice, including an assessment of protein intake, is 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 develop a second wind.


At times there will also be opportunities to see the Neuromuscular Physiotherapist.

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

Repeat appointments
Patients are normally seen every 1-2 years, but this may vary according to your needs. The clinic is held only 4 times per year, so new patients may have to wait a few months before being seen.

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.

Tea and coffee
Free tea and coffee are provided by AGSD (UK) - please help yourself from the trolley.

Questions
If you have any questions please do not hesitate to ask at the clinic’s reception desk.