HELPING PATIENTS TO UNDERSTAND
Patients who understand the concepts behind their condition and have learnt how to manage well, have a significantly improved quality of life. Conversely, those who have not had the opportunity to grasp the fundamentals can experience persistent pain, be frequently hospitalized, accumulate muscle damage, suffer deterioration in their condition, experience psychological issues and develop concomitant conditions.
Educating patients about their condition at conferences and workshops around the world.
To achieve the education of people with a muscle GSD promptly after receiving their diagnosis.
We now have a wide range of publications.
We will work towards our goal by:
Publishing patient-focussed information for people diagnosed with a muscle GSD.
Maintaining a high profile web site which an be easily found by people who are newly diagnosed, with reliable and up-to-date information.
Operating social media channels for people with muscle GSDs and providing experienced Admins to monitor posts and provide appropriate guidance as necessary.
Producing video and audio recordings explaining aspects of muscle GSD and its management.
Running practical courses to help people understand and practice management techniques and expand their boundaries.
Presenting at conferences and workshops to disseminate effective management techniques.
We have a range of social media, including multiple Facebook groups with strong administration.
We have produced a series of leaflets designed to assist those with McArdle’s to understand various aspects, and to effectively explain the situation to others as necessary. These include leaflets aimed at friends and family, school, employers, personal trainers and hospital emergency staff. There are also advice leaflets on travelling and emotional well-being.
We have added to the long established “101 Tips” book with a booklet “Living with McArdle Disease”, going into much more depth about key subjects.
Our website continues to expand and is now very comprehensive in regard to McArdle’s. We look forward to being able to provide more information on the more rare muscle GSDs.
We maintain a number of Facebook groups, the main one for McArdle’s now having over 2600 members. These have a strong administration and are very busy. We also have channels for GSD7 and GSD9d. We have other social media channels which are not as active.
Our YouTube channel now has 50 videos, and in the year to November 2023 it had 2900 views. We are currently developing a series of training videos on key topics.
In line with our objective to have more courses run around the world, in 2023 we ran a Future Leaders training course with participants from seven countries.
IamGSD board members have presented at conferences and workshops both online and in person around the world, and are available for future bookings.
We plan to run more courses in more countries in the coming years.
This task will probably never be finished. As new needs arise, we will endeavour to respond. Our focus has been mainly on McArdle’s due to the numbers affected. As the needs for this condition are met, we will endeavour to turn more of our attention to the even more rare muscle GSDs.