Articles for the ‘Trustees and Employees’ category
My first proper introduction to the ISG was at the 2007 conference in Bloomsbury, London. My wife, Sue, said that her friend Maggie Aldwin was looking for volunteers to help over that weekend. It was to be a special weekend as the ISG was celebrating its 10th anniversary, so of course I said yes. I […]
Five years ago my wife Sonia and I had never heard of the skin condition known as ichthyosis. When my second daughter Annabelle was born on the 5th November 2004 this was to change. Having already been blessed with a beautiful daughter Lydia Mae some 3 years earlier we never imagined that we would be […]
I joined the committee in July 09 and attended my first face to face committee meeting on 16th August 09. What a meeting that was! Maggie Aldwin picked me up from home and we travelled up the M1 to Milton Keynes for that first meeting, leaving my poor husband to sort out the washing and […]
My daughter Mandy (please refer to her profile) was born in 1976 in the Royal Berkshire Hospital. She was 5 and half weeks early and very poorly, and they whisked her off to intensive care without me even having a cuddle. My husband was unable to be with me at her birth, and I remember […]
When my oldest daughter was born in 2000 all was wonderful, apart from a few rough patches on her skin. However, the following day her skin begin to blister and suddenly starting shedding all over and would not stop – nearly all of her skin from the neck down came off and she was left […]
Mandy is a founder trustee and has been a volunteer for the ISG since 1997. Mandy is a member of the Medical Advisory Board and liaises with the pharmaceutical companies.
My name is Liz I am 37 years old and am married to John. We have two daughters, Ellamay born in 2004, who was born a collodion baby and has Non Bullous ichthyosis and Maisy born in 2010 and does not have ichthyosis. I work part time as a nurse, my background is in mental health nursing […]