Living with eczema

Those of us lucky enough to have relatively normal skin all pay lip service to ‘how awful it must be to have bad eczema’ and ‘those poor little children’ with weeping, open sores. (Pictures courtesy of Dr Harry Morrow Brown.) And indeed we do feel genuinely sympathetic – but how little we really understand.

So bravo for Ruth Holroyd who, as many of you will know, runs the excellent What Allergy? blog, for bearing her soul about how totally miserable it is to have a bad eczema flare up. (Read her post here.) As she says, she often talks about her
allergies (anaphylactic to nuts and milk and possibly celery, intolerant to tomatoes and a whole raft of other foods) as allergies make for interesting conversation – but eczema… Who wants to know that you are itchy, hot, scratchy, slimy from too much moisturiser, cannot bear to look at your red, rough skin in the mirror or let anyone else see you either, are grumpy from too little sleep….

Because it is Ruth, and, despite her allergies and her eczema, she is a totally upbeat person, the post contains not only her vent on the horribleness of an eczema flare up, but eleven really useful tips for minimising the misery and helping the eczema to clear.

Ruth’s rant reminded me of reading, some year’s ago, Jennifer worth’s ‘Eczema and food Allergy: the hidden cause?’ Jennifer, who sadly died last year, was not only a generous donor and supporter of the allergy charity Action Against Allergy, of which I am a trustee, but the author of Call the Midwife, her hugely successfully reminiscences of her life as a midwife in the East End of London in the 1950s which has now been made into an even more successful prime time telly series.

Jennifer was brought down, in her early 60s, by appalling eczema that covered her from head to foot, her skin cracking, weeping and itching all over her body. It turned out that her eczema was caused by food allergy and was finally successfully treated by a combination of a rigid elimination diet and Enzyme Potentiated Desensitisation (EPD) – an immunotherapy type treatment which worked on a range of allergens at the same time.

You can still get Jennifer’s book about eczema from Merton Books (also the first publishers of Call the Midwife). You can read the article that she wrote for Foods Matter about EPD here. But, before you get too excited about  EPD  as a possible treatment for allergy or for allergy-related eczema, I have to tell you that it is not currently available in this country – or, indeed, anywhere.

Pioneered by Dr Len McEwen (now retired), EPD was never adopted by the NHS although it was used quite widely in the US. However, an American regulation banning the use of multiple allergens in the formulation virtually halved the market and meant that it was not longer viable to produce in the UK.

However, all is not yet lost. I have just spoken to the  the Friends of EPD, who are part of the National Society for Research into Allergy , who told me that they are hoping to raise sufficient funds to reopen an EPD laboratory and to restart both production and treatment. They suggest that, if you are interested, you stay in touch with them.

 

 

Allergic to milk vapour?

I have just been reading a post on Ruth Holroyd’s excellent What Allergy blog in which she asks whether she could be reacting to milk vapour in coffee shops? Ruth is extremely sensitive to a number of foods, including milk (anaphylactic to any ingested milk) but whereas she had been OK in coffee shops she now finds herself getting asthmatic reactions which cease as soon as she leaves the shop. So she was wondering whether it could be the milk vapour.
I have never heard of anyone getting an reaction to milk vapours but people who are fish allergic certainly do react to fish vapour so I fear that it is only too likely. After all there must be an awful lot of milk vapour floating round your average Starbucks!
Ruth is looking for feedback from anyone who might have any experience. Because she is a freelance writer and works alone, her social visits to coffee shops to meet a friend are really important to her. Any feedback would be very welcome – either direct to Ruth or via us – but meanwhile I suggested that she try a few basic avoidance procedures.
1. Try to sit in the corner of the shop so that milk vapour is only coming at you from one angle.
2. Never go up to the counter to buy – let someone else do that – as the majority of vapour will be in the ‘making’ area.
3. Wear an elegant chiffon scarf casually whipped around your head – it won’t filter out much but every little helps!
4. Try to go at relatively un-busy times – avoid lunchtime – when there will be fewer people flashing their milk around.
5. Aim for larger rather than small shops – more air for the vapour to disperse in.
6. Carry a packet of baby wipes with you and get whoever you are with to mop  the table and chairs before you sit down to ensure there is no milk residue on them. Make sure the used wipe is immediately thrown out.
7. And, obviously  - carry your Epipen/inhalers etc to reduce your stress levels.
Further suggestions very welcome.