Growing up Scratchy - Living with Eczema

For the last 40 years I have lived with a fairly low profile but very high impact disease - eczema.  It's difficult to explain to somebody who doesn't have eczema just how much it affects your life.  Perhaps the best way of explaining what eczema feels like is to explain that it comes from the Greek word 'ekzein' which means 'to boil'.  Eczema at its worst feels like your skin is on fire.  Incredibly 1 in 5 children and 1 in 12 adults in the UK suffer from eczema.  There is loads of different information about the different types of eczema here.

Eczema is a 'non-disease.'  It's not high profile or life threatening so the medical response is patchy and poorly resourced.  I may be paranoid but I can't help feeling that some of the doctors I have seen seem to imply that I could be doing a lot more to help myself.  A recent consultant gave me the third degree for missing my patch tests (we were on holiday at the time).  While this is my own experience our son Alasdair has a very supportive GP and dermatologist at the moment.

I had fairly extreme eczema as a kid but have always suffered with bad eczema on my hands as an adult.  At best it can be irritating but at worst it can be debilitating and can make work complicated.  Last year my hands become infected 5-6 times over the summer and autumn.  Large blisters appeared on my hands and my fingers became infected.  I lost 3 nails on my right hand with the infection and was on non-stop anti-biotics for months.  The result?  After about 25 years away from dermatology I am back on their books. 

The smell of cold tar and the familiar names of dermovate, betnovate and eumovate are part and parcel of the Dermatology Dept at Lauriston and it feels like I've never been away.  There is an almost Victorian feel to the Dermatology Department with a complete absence of any high tech equipment.  The Victorian feel is backed up by the patriarchal system of male doctors giving instructions to an army of female auxiliaries who fetch and carry files and take blood samples from willing victims.  My first visit back to dressings after nearly 25 years away involved red paint being dabbed on my cuts, cold tar smeared on my hands and walking out with mickey mouse gloves.  I had some strange looks as I sipped coffee in the Elephant House before going in to the National Library!

Last Saturday we attended our first family weekend with Eczema Outreach Scotland.  It was great to meet other parents affected by eczema and hear some fairly familiar stories.  The event was in the Howden Park Centre in Livingston and while our boys politely declined the dance workshop they had a great time at the arts and crafts (no. 4 son Ali was a bit scratchy and shy).

As with so many inspirational charities, Eczema Outreach Scotland, was set up by one mother frustrated with how little support there was for families affected my eczema.  The founder is called Magali Speight (pictured below with Kirsteen) whose daughter suffers from eczema.  Magali proves what one person can do with energy and vision.  After only one year the organisation has around 150 families who have received their welcome pack and attended their growing number of events.

Those with kids who have eczema are affected in all sort of ways - from sleep deprivation, food allergies, to endless hospital appointments and the usual round of comments in the supermarket as you explain that your son (or daughter) isn't a burns victim.  Most of us have experienced the frustrations of a less than zealous medical response.  I remember sitting in a consultants office with our 2nd son Calum around 7 years ago.  His face was red raw with weeping sores and he was screaming in pain night after night.  Despite this the consultant said there was nothing else he could do for us.  Not for the last time we walked out of a medical appointment feeling unsupported and very alone. 

Of our 4 boys 3 have eczema with little Alasdair (centre below) being by far the worst.  When we tell people that he has hardly slept all night for the last 3 years, people think we are exaggerating.  He can go through phases when after 2-3 hours of sleep he can be unsettled for the rest of the night.  At times I've gone in to work on 3-4 hours of fitful sleep.  Talking to some other fathers at the event last week, sleep deprivation comes up the most challenging issue.  Some spoke of being in medical jobs where a mistake could lead to disastrous consequences and found little support from their employer.

Is there hope?  Yes there is.  Kids can get better - there is always hope they can grow out of it.  Calum (10), despite having extreme food allergies has almost outgrown eczema apart from the soles of his feet.

Family is a huge help.  James (13) has eczema so has an incredible bond with Ali.  Often he will help him calm down when he is in a scratching fit. Use extended family to get a break, have a meal and have a good sleep!

As a couple it is important to work as a team.  If both of us are having a sleepless night it can be horrendous.  Better that at least one sleeps and the other tries to calm down the scratchy kid or that we take 2 hourly shifts.  All the couples I have spoken to say that having a child with eczema can have a significant impact on your marriage and family life.  Acknowledging this and talking about it can be first step to seeking more support.  If possible get other family involved so that even once a month you can have a full nights sleep.

Organisations like Eczema Outreach Scotland are excellent.  Bringing families together for mutual support is such a help and even though it doesn't solve the problem, at least people feel less alone as they struggle through. 

Assertiveness can help.  Some GP's don't routinely refer eczema sufferers to dermatologists.  If you are struggling, insist on a referral and keep fighting until you get one.  Once you see a specialist you will hopefully remain in the system until things are a little better.

Lastly, and most importantly for us, faith is a huge element of our life with eczema.  We believe in a God who hears and answers prayer and in a Saviour who knew what it was like to suffer.  We don't believe that suffering is meaningless but we believe that 'for those who love God all things work together for good, for those who are called according to his purpose' Romans 8 v 28. 

The Psalms are also a great comfort to us - in them we find a great reality and comfort.  Let me leave you with one of my favourites; 'You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again.  You will increase my greatness and comfort me again Psalms 71 v 20, 21.