Recent event:

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

 

Support for people with GSD Type VII

 



Co-ordinator and contacts

Marilyn Silver is the Type VII co-ordinator with AGSD (UK). This voluntary role is to: answer questions from peopel affected by the condition; represent their interests to the AGSD-UK Board of Trustees; liaise with and assist the Clinic in London and other organisations involved with Type VII; attend the Clinic days to meet people; organise the Type VII workshop at the annual conference; and approve any use of Type VII funds held by AGSD-UK.

People who are newly diagnosed with McArdle disease usually have a great number of questions and Marilyn tries to answer these. Sometimes it is appropriate to put people 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 Marilyn by email at type7@agsd.org.uk.



Workshops at annual conference

At the AGSD-UK annual conference, usually on a weekend in October, we hold a Type VII workshop. This is an excellent opportunity for people to meet each other; many stay over to get together socially on Saturday evening.

The workshop includes 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 GSD Type VII

This is a great way to ask a question and find other people who have already experienced the same issue. The group is open to anyone who is diagnosed with or has an interest in GSD Type VII. Remember that these people are not medical professionals but have the condition themselves - that can be very helpful in swapping experiences. However, take care not to treat someone's opinion as scientific fact. You can view the posts before deciding to join. Just click 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 relatively few posts about Type VII due to the small number of people diagnosed. To make a 'post' you simply send an email to the server. You can restrict the emails you receive to just those concerning Type VII (i.e. 7). Instructions for joining are here.



Muscular Dystrophy Campaign
GSD Type VII is a neuromuscular condition which comes within the remit of the Muscular Dystrophy Campaign (MDC). Although the MDC is less active in GSDs than the AGSD-UK, they do have an information, support and advocacy services accessible by phone, post and email. And 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 Campaign
61 Southwark Street
London SE1 0HL
Tel: 020 7803 4800
Email: info@muscular-dystrophy.org
www.muscular-dystrophy.org