Difficulty in meeting other people with a GSD

We often hear that people are disappointed not to have met other GSD patients whilst visiting a clinic or treatment centre. Due to patient confidentiality, and perhaps pressure of time, staff are usually not able to make introductions.

A help to meet others

If people had the option of “wearing” a discreet sticky label just showing the AGSD-UK tree symbol, it would mean that anyone else being in the know about the symbol would be able to make an approach. The label gives nothing away about your name, identity or why you are at the hospital.

At some clinics there are a group of GSD patients attending on the same day, whereas at others it may just be pot luck if there happens to be another GSD patient in clinic. This scheme will work in either situation, but would obviously be most effective in group clinics.

Wear your discreet label in clinic

The idea is that as you arrive in clinic you put a label on your lapel (or somewhere else very visible, maybe on your folder of papers). Then you can be noticed whether in reception, in a corridor, in the cafe, or in the waiting area. Just as others can approach you, you could also spot other patients displaying the logo and approach them.

The labels would be 50mm diameter, printed on paper with removable adhesive. We could send a strip of half a dozen or more to anyone who wishes to opt in to this scheme. Keep the labels with your clinic papers. (We also thought about a metal button badge, with a safety pin type of attachment. However, those are harder to post out, cost more, are not easy to keep with your papers, and although they are reusable you would only have one. So if mislaid or forgotten you would be in clinic without it.)

We would like your feedback on this idea

Please use the comment section below, or alternatively use the “Message us” form, to let us know whether or not you like this idea, or have any suggestions.

Photo: A great way to spot other GSD people in a busy waiting area serving several clinics.