Recent event:

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

 

Support for McArdle patients

 



Contacts

Andrew Wakelin is the Type V McArdle representative to AGSD (UK). This voluntary role is to: answer questions from McArdle patients; represent the interests of McArdle patients to the AGSD Executive Committee; liaise with and assist the McArdle Clinic at Oswestry and other organisations involved with McArdle disease; attend McArdle Clinic days to meet patients; organise the McArdle workshop at the annual conference; and approve any use of McArdle funds held by AGSD-UK.

People who are newly diagnosed with McArdle disease usually have a great number of questions and Andrew tries to answer all of these. Sometimes it is appropriate to put patients in touch with each other because either they live in the same area or have similar circumstances. This is only ever done with the advance approval of both parties.

You can contact Andrew by email at type5@agsd.org.uk.



The UK McArdle Clinic

Many patients are diagnosed at hospitals around the UK where, due to the rarity of the condition, the consultant concerned has few or no other McArdle patients. The support on offer is therefore often very limited. However, patients may ask their GP to refer them to the UK's only McArdle Clinic. At the clinic they will receive a broad range of medical support, be kept up to date with the latest information and be able to meet other patients. For full details please see the page 'The UK McArdle Clinic'.



Workshops at annual conference

At the AGSD annual conference, usually held on the first or second Saturday of October, we hold a McArdle workshop. This is an excellent opportunity for patients to meet each other; many stay over on the Friday night to get together socially on Friday evening.

The workshop usually starts with a presentation on a subject relating to research or therapy and is given by a medical professional. Previous talks have included: gene therapy research in Australia using a flock of sheep which have McArdle disease; Dr Alfred Slonim, a leading McArdle consultant from New York; and exercise physiologists from the British Olympic Team. We also have an update on the McArdle Clinic and research at the Centre for Inherited Neuromuscular Disease at Oswestry from Dr Ros Quinlivan or one of her team. Finally we have a patient-focussed session when we talk about issues we have in common, share experiences and offer each other helpful tips.

Details of the next conference can be found under Conferences. Reports from workshops at previous annual conferences can be found under Workshop Reports.



Facebook group for McArdle Disease

There are now over 1,300 members of the main McArdle's Facebook group from all around the world, although largely from English speaking areas such as UK, North America and Australasia. (There are some smaller groups posting in German and French.) It is a great way to ask a question and find other people who have already experienced the same issue. Remember that these people are not medical professionals but have the disease themselves - that can be very helpful in swapping experiences. However, take care not to treat someone's opinion as scientific fact. Type "McArdle's Disease" in Facebook's search box, or try this link



GSD Net on-line support group
GSD Net is a FREE email mailing list system which enables communication between patients with any type of glycogen storage disease. It has worked well for many years but now there are very few posts about McArdle's due to the popularity of the Facebook group (above). To make a 'post' you simply send an email to the server. You can restrict the emails you receive to just those concerning McArdle disease - Type 5. Instructions for joining are here.



Muscular Dystrophy UK
McArdle disease is a neuromuscular condition which comes within the remit of Muscular Dystrophy UK (MDUK). They too have information on McArdle disease on their web site. Although MDUK is less active in McArdle disease than the AGSD-UK, they do have a support and advocacy service accessible by phone, post and email. They have a team of Care Advisors who can give specialist advice and support and help deal with organisations such as Social Services and the NHS.

Muscular Dystrophy UK
Tel: 020 7803 4800
Email: info@musculardystrophyuk.org
www.musculardystrophyuk.org