Politics: Raising awareness is key to conditions such as Epidermolysis bullosa
Earlier this month I was able to meet with my constituent John McKenzie who was keen to highlight the work he has been doing with the charity Debra.
John has a direct connection to the work of the charity in that he himself suffers from the skin condition which Debra seek to raise awareness about.
Epidermolysis bullosa (EB) is the name for a group of painful genetic skin conditions that cause the skin to become very fragile and tear or blister at the slightest touch.
The name comes from ‘epiderm’ - the outer layer of skin, ‘lysis’ - the breakdown of cells and ‘bullosa’ - blisters.
There are many different types of EB, all classified under four main types ranging from the mildest, in which only the hands and feet are affected, to the most severe, which can have a devastating effect on any part of the body causing lifelong disability and pain.
John has had EB since the day he was born and was able to tell me movingly about what living with the condition is like and the impact it has had on him.
It is a real honour to meet with constituents and to find out about issues which impact their day-to-day lives, and I am pleased to be able to highlight this charity which does such vital work to help those who are suffering with EB.
If you would like to find out more, Debra has some brilliant resources available on its website.
I would like to thank John for taking the time to inform me about the work of Debra and what living with his condition has meant to him.
A memorial book for parents, which commemorates the loss of a pregnancy before 24 weeks, is now open for applications.
The book was produced jointly by the Scottish Government and National Records of Scotland and was developed after listening to people who have experienced a pregnancy or baby loss prior to 24 weeks of pregnancy. It is a free and entirely optional service.
The Scottish Government has worked with health professionals, Royal Colleges, baby loss charities and National Records of Scotland to develop a Memorial Book of Pregnancy and Baby Loss, which provides a record of the loss, and a commemorative certificate.
I fully support the launch of this memorial book - the loss of a baby at any stage of pregnancy has a profound impact on everyone who is affected.
The Scottish Government has sought to listen to parents and their individual stories and the impact that having no record of their loss had on them.
I hope this can in some small way give comfort to those who have experienced baby loss.
Applications can be made by going online to www.nrscotland.gov.uk/registration/memorial-book-of-pregnancy-and-baby-loss-prior-to-24-weeks and downloading and printing the application form.
