“The only scratchy girl in the world”, or the story of how a unique eczema support group started.
Friday March 16, 2018 by QV Skincare UK
But one night, then aged 5, my daughter let out tearfully: “Why am I the only scratchy girl in the world, Maman?” At that very moment, exhausted after a couple of hours of treatments and unsuccessful attempts to stop my little girl from scratching herself to shreds, I felt like the only eczema mum in the world too.
As I continued to helplessly witness Gaelle’s confidence and moods spiral downwards, I promised myself we would meet families like us for some vital peer-support. “There must be others” I thought.
In 2011 we started to meet other families who were also dealing with severe childhood eczema and we began to feel different. We started to feel less alone, more knowledgeable and above all, more positive about coping with the impact of eczema on our life.
From this the idea of setting up a support group grew stronger and Eczema Outreach Support was born. I felt hopeful and Gaelle’s skin had started improving too.
Initially, only a trickle of families heard about our Scottish group and we had a few members join every month, each receiving a free welcome pack full of information on ways to manage eczema and invitations to local outings. A small grant from the Lottery made this possible but as the membership grew, I could no longer offer the service in my spare time. Thankfully, a couple of larger grants allowed me to appoint part-time staff and hire a small office in Linlithgow, near my home in West Lothian.
Six years on and the charity’s seven part-time employees have been delivering our unique emotional and practical support service to over 1,000 families struggling to cope with the burden of childhood eczema on life. Often at crisis point, families joining EOS continue to receive a welcome pack and invitation to events, but now also access 1-1 support, specialist resources, a virtual children’s club called the High 5 Club and the XY Club for teens, access to our online community and help with setting up treatment plans with schools.
In many cases we offer face-to-face intensive support involving home visits, advocacy meetings and on-going contact, aiming to see a positive difference in our members’ coping skills. Our outreach staff also runs workshops in our members’ schools and with health visitors, while developing new projects in partnership with our healthcare partners.
What keeps me shouting on the rooftops about eczema is that, although it affects up to 20% of children in the UK and is on the increase, its impact is still vastly misunderstood by the general public, which deepens the isolation our families feel. Sadly, the reality for people living with this chronic skin condition is shaped by painful flares and constant itch, infections, time-consuming treatments, sleepless nights, days off school and work for parents and feelings of despair. While my daughter was never bullied, studies show that 20% of children with eczema are and one in two has low self-esteem.
Like one in five mothers of children with eczema I felt like a failure caring for my daughter, thinking to myself “What kind of mother am I if I can’t stop my child’s suffering?” The truth is that eczema can be very unpredictable and frustrating but with the right advice, I have seen lives turned around and families find hope in the future again.
Later this year, we plan to open up our support service to families across the UK, not just Scotland, and it fills my heart with joy to think of all the new children and families we will be able to help for the first time.
Our family at the time of creating Eczema Outreach Support
Founder and CEO of EOS