Eczema Support #CharityTuesday

Posted on 31st January 2012 in #charitytuesday/ childhood eczema/ eczema

Today for #CharityTuesday I am handing you over to @EczemaSupport. This isn’t a plea for money, just for a little more awareness and understanding.

This is something I am 100% behind as my oldest son has suffered with eczema all his life and we find that people can be quite ignorant of the condition. Even today I have had to email his school as yesterday he was told he couldn’t use the cafeteria anymore because his fingerprint won’t scan properly – why wont it scan? because he has eczema! I’ve told them I consider this to be discrimination and that I expect them to find a solution, that does not cause him any embarrassment, very quickly!

Anyway, over to @EczemaSupport – who I have to say are absolutely lovely to tweet with, always there with a suggestion or a caring word.

Eczema is a problem that some children get but, not to worry because they grow out of it, right?  Like most easy statements, there is much more to it than that.  One in five children have eczema and  it can improve with age (but not always).  One in ten adults have eczema, either because they never ‘grew out of it’ or eczema manifested itself later in life.

We are a unique collaboration between health care professionals based at the paediatric department of the local teaching hospital and carers of children with eczema.  So we have an understanding of the nightmare that living with eczema can be – plus all the evidence based knowledge about current methods of managing eczema.  Nottingham Support Group for Carers of Children with Eczema was started about twenty years ago and five years ago we moved to providing support via the web.  There are over 30 patient information leaflets on our website http://www.nottinghameczema.org.uk/download.html.

Since eczema is episodic, it can be unpredictable.  You can never tell when a flare will happen.  The wonderful thing about Twitter (@eczemasupport) is that we are able to interact with those living with eczema in real time.  Eczema in childhood disrupts sleep for the whole family and coping with the distress of seeing a loved one ripping their skin to pieces is not easy at any time, but add sleep deprivation into the mix and it does not make for an easy situation.  Those with eczema may also go on to develop asthma or hay fever or food allergies.  This multiplicity is the reality of many families’ lives.

Everyone’s skin and lifestyle is slightly different.  Eczema responds to multiple triggers and the same ones do not affect eczema skin, even in siblings, the same way.  So there are lots of different ways to manage eczema and often it is trial and error to find the right treatment for that particular skin.  We hope we are there to offer encouragement and information about the options, whilst helping to steer people away from a multitude of dubious remedies.

And then there are other discussions we have had on Twitter – for instance, in this digital age, should photographs be retouched to remove the ravages of eczema or be a reflection of the struggles that exist?  Most eczema sufferers hate having their photographs being taken but some are unavoidable (school photographs and family events perhaps).

For further information:

Website: www.nottinghameczema.org.uk

Facebook: http://www.facebook.com/#!/pages/Nottingham-Support-Group-for-Carers-of-Children-with-Eczema/150437965026750

Twitter: @EczemaSupport

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1 Comment

  • Reply Marcie Mom 1st February 2012 at 8:46 am

    Great interview with Nottingham Eczema! I’ve had the honor of interviewing her to find out how to run a support group in today’s context, the interview is published here
    http://eczemablues.com/2011/11/building-a-vibrant-support-group-in-todays-society/

    I’ve a girl with eczema, and has been blogging on eczemablues.com for over a year now to provide info and laughter to parents with weekly cartoon. Plus, the first eczema fund to pay for treatment for low income has just kickstart in Singapore, it’s initiated by my donation! Eczema is certainly not a blessing but I’m hoping my work can be one to others families with eczema kids.

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