(From Allergy Today Issue 124 Autumn 2008. Subscribe here.)

Severe eczema isn’t just reserved for young children. Nicola Warner has spent a lifetime trying to keep her skin under control— and despite the discomfort, she hasn’t let it get in the way of life. Here’s her story.

Winning the battle

One of the worst things about eczema, apart from the eczema itself, is the hopelessness of it. No one really knows what to do with you.

I have atopic eczema and the most severe allergies of anyone I know. As a baby, I was diagnosed with allergies to dust mite, grass pollen, cat, milk and egg allergy. I thrived on soy milk formula, and my biggest problems were asthma and pneumonia. Just as puberty hit my asthma became relatively mild and eczema took over. I remember being at intermediate school and having to sit on a chair while everyone else sat on the ground because my eczema would flare up. I rather enjoyed the extra privileges but hated it when I had to go to school with my face looking bad. I’m so impressed with the better education there is about allergies now — that and taking a pillowcase to sit on (we never thought of that). It would have made a real difference to me.

I had a type of desensitisation treatment in Form I (Year 7). I don’t know if this is still offered anymore. I’m not even sure how it works, but after getting very bad for a while my allergies settled right down. I had little eczema or asthma, and was actually able to tolerate dairy and egg in baking. I could eat chocolate and ice-cream, and it was great!

In Form VI (Year 12) the allergies returned with a vengeance, so we decided to go back for the desensitisation treatment again. I became the sickest I have ever been. I developed chronic hives and eczema all over my body. My weight dropped from 43kg (I wasn’t big to start with – years of steroids!) to 38kg. I lost most of my body hair except for the hair on my head. My periods virtually stopped. My skin was bright red and it would flake off constantly, but was only ever raw underneath. When I went to school I would last half the day before coming home to sleep in front of the heater all afternoon. I wore layers and layers of clothing because I was always so cold. It was a nightmare few months and I remember my mother deciding one day, as I sat in front of the heater itching and crying, that enough was enough. She made a phone call and I began my love affair with prednisone.

I can’t remember how long I took prednisone for, but it was long enough to give me a ‘moon face’. I thought I looked great, it was such an improvement. My allergy specialist prescribed a lot of vitamin and mineral supplements and I abandoned the vaccines. I remember seeing a skin specialist at Auckland hospital around this time. He wanted to put me in hospital, but it was the very last place I wanted to be. As far as I was concerned I had eczema - I wasn’t sick.

The only things that kept me sane through this time were a truly wonderful family and group of friends, and faith in God. There was always the knowledge that I was loved and the hope that one day, somehow, I would get better. Very gradually I did improve until my skin was fairly normal again. It took at least 18 months. Unfortunately it was during my recovery that I discovered first hand what anaphylaxis was (I had never heard of it before). It was just like the stories you read about in the newspaper, except in those stories the unsuspecting, unprepared teenager dies, and I didn’t.

A golden respite from eczema followed. I got an A bursary (in spite of missing half of seventh form), graduated from law school and got married. The day I met my husband he confided in a friend that he would never marry anyone who couldn’t eat proper food. Famous last words. Glen has been my champion. He always says exactly the right thing on bad days and is thrilled for me on good days. One very bad day he got off work early and travelled across Auckland to buy me sorbet – my most adored safe treat. Everyone needs a Glen! My skin was the best it has ever been on our honeymoon in Fiji – high humidity, sun and sea.

My skin began to go downhill ever so gradually towards the end of study. It has not been as great as it was before then. I don’t know why. The five children didn’t help, but in hindsight I think they have been a much better lifestyle for me than a demanding law career would have been.

Pregnancy didn’t really agree with me, although I am a lot more sensitive now than when I had my first baby. With each pregnancy my skin would mount worsening flare-ups, recovering somewhat in between. My third pregnancy saw me covered in eczema with a bright, tight red face. Most of the photos of me and my baby are from the neck down.
Then I got recurrent boils. They lasted for two-and-a-half years. The most I had at one time were 20. I went to countless doctors and no one knew what to do. Finally I found a solution when my cousin mentioned me to her doctor. Through his advice I asked to be referred to the infectious diseases department and after nine months of strong antibiotics I was boil-free. My eczema was manageable but not great. As a last ditch effort I began the Failsafe Diet ... and I was shocked to discover we were expecting baby number four.

What a dream pregnancy! I had a limited but very healthy diet, and although my skin wasn’t perfect it was still good. The failsafe effects weren’t long term but they made a huge difference at the time. But then came baby number five. It wasn’t fun because I had chronic hives, severe eczema and the worst skin reaction I had ever experienced. It was my first visit to a dermatologist in a long time, after begging my doctor to send me, and he changed all my creams. The next day I could hardly move. My wonderful husband raced home from work. Mum and Dad took over the household. I lay on the couch and cried and slept for days. My doctor told me I just had to be brave. I told her I wasn’t leaving her surgery without prednisone. Then the skin became infected. My new dermatologist told me later that they would have admitted me as an acute case, if only I had known to turn up at the hospital.

Our gorgeous fifth baby is one-and-a-half now. My eczema, until two weeks ago, has been an unrelenting battle of hives and a red face flare up every four days, although it is ever so slowly improving and much better than while I was pregnant. But, two weeks ago, after much trepidation, I started taking an immunosuppressant drug, cyclosporin. I now have clear soft, smooth skin that doesn’t itch! I can hardly believe it and I am so excited and also so scared it won’t last.

Writing about my life with eczema is like telling you all the worst things that have happened to me without any of the good. It hasn’t been a sad miserable life at all. It has been a rich, wonderful, happy life in spite of allergies. I have just had to work a bit harder to make the most of it than some people. Some days, eczema rules my life and consumes me with the discomfort. Other days, once I’m up and moisturised, I barely notice it.

So, this is my hope – that at last my skin will have a chance to heal and become less sensitive. Thanks to cyclosporin I might even escape hay fever this season and I might, at last, be on the road to getting better.

Here are some tips and thinks I wish I had known:

• Get thee to a good specialist and go back regularly. I wish I had done this a long time ago. My skin is damaged from steroid overuse because I was ignorant and not given enough support.
• You have to be pushy (but polite). No one cares about your skin quite like you do.
• You don’t know it all! I thought I did after years with eczema but I am always learning new things.
• Bathing in sea salt or rinsing in a sea salt solution after a bath helps keep your skin more moist. I always improve on holiday in the sun and surf.
• Read The Eczema Solution by Sue Armstrong-Brown. This book takes you through a programme run in one of England’s hospitals for people with atopic eczema. I wish someone would start it here. I tried to work through it myself (with my doctor’s bemused approval) but hit a brick wall and couldn’t find anyone who could tell me what to do next.
• Ice-packs are your friends. I take them to bed instead of hot water bottles when I’m itchy. Guaranteed to help you sleep.
• Have a list of things that you like to do or that make you laugh. When you’re having a bad day you need distractions and it’s too hard to think straight when you’re itchy and uncomfortable. Going to the beach for a walk works wonders for me.
• Hard situations are character building. Eczema can be very, very character building!
• Enjoy life! Eczema is inconvenient and horrible but there is more to life than eczema.

What is the Failsafe Diet?

The Failsafe Diet was developed by Australian Sue Dengate and is free of additives, low in salicylates, amines and flavour enhances. Salicylates and amines are naturally occurring chemicals found in certain foods.

Remember, it is extremely important to see a registered dietitian before you start withdrawing any food groups from your diet to ensure you get optimal nutrition.

To find a registered dietitian in your area, go to the New Zealand Dietetic Association’s website www.dietitians.org.nz.

What is cyclosporin?

Cyclosporin is an immunosuppressant drug widely used in organ transplant to reduce the activity of the patient’s immune system and so the risk of organ rejection.
It is used only to treat severe eczema that doesn’t respond to basic treatments.