It began with a telephone call on Wednesday. A manufacturing company that makes medical devices told me of a new handheld device that could be used to monitor the haemoglobin of patients on a daily basis, using just a pin-prick blood sample.
All very interesting but why were they calling me?
“Because we think it may be able to explain why some of your members may benefit from using it”.
The caller then asked if it would be possible for him and his colleague to meet with a group of our members to find out what patients with Pernicious Anaemia would think, and maybe expect, of the device.
I consulted with Joanne who is organising the south Wales Support Group meeting next Saturday (8th October, 10.30am at the society’s offices) and she agreed that the developers could have some time to interview the group. So, it will be interesting to find out more about the device and if it would indeed help our members.
It’s going to be a good meeting as the group have a Guest Speaker who is a member of the society and who will be explaining how alternative therapies can help patients to manage their condition.
This issue of alternative therapies is often discussed amongst members and I know that when I was first diagnosed with Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia I enrolled in a course of ten Reiki treatments that I believed help me retrieve some feeling in my legs – though this could, of course, have been due to the loading dose injections that I was receiving. In the end no further improvement was noticed and I stopped the treatments, but I know that some patients benefit from this and other alternative treatments; hypnosis, massage etc.
These Support Groups are a fabulous resource for members who feel isolated and alone due to others not fully appreciating just how Pernicious Anaemia can and does impact on patients’ everyday lives. Our new Business Plan reflects the need to recruit somebody to co-ordinate and oversee the setting up of new groups for the benefit of patients.
So, all in all Saturday’s meeting is going to be interesting. Oh! And you don’t have to live in south Wales to attend – but if you are attending please make sure you let Joanne know that you are coming along so we have enough (free) refreshments. Members can access her details via the Member Homepage on the PAS website or, after login, on our Community page.