National Eczema Week: It's eczema Jim, but not as we know it

This week is National Eczema Week (14th September - 22nd September). To mark the occasion I will be posting a series of posts every day of the week, either from myself or from my partner Jenny. Today's post is my 'It's Eczema Jim, but not as we know it' post, where I tried to explain how there is much more to eczema than many people realise and how Jenny is (un)lucky enough to have experienced most of it's different forms.

Living with Eczema (originally posted on 8th July)

When I set out this year to run 1000km for the National Eczema Society, I also intended to help raise awareness of an often misunderstood disease. Jenny has done a fantastic job at this herself with her blog, I Have Eczema, which she started in January to give people a personal view on what it is like to suffer with the condition. Her blog has been met with an unbelievable response, with tens of thousands of views from all across the world.

So far this year I have more than lived up to the running side of the pledge, but I feel I have done little to try and raise awareness, this post is very much an attempt to rectify that. 

Four years ago, before I met Jenny, I like many thought I had a fairly good understanding of what Eczema was. It was a mild skin condition that gives you red, itchy wrists. My eyes were soon opened to the extent of the condition however, and I have since learnt of the truly debilitating effects that it can have on day to day life.

First off, I never realised that eczema was a branching term of a number of different skin conditions, all of which share many of the same symptoms. Jenny suffers from many different forms of eczema including, atopic dermatitis, sebhorreic dermatitis, contact dermatitis, neurodermatitis and dishidrotic eczema, alongside urticaria, multiple allergies, asthma and hayfever.

Atopic dermatitis: the most common form of eczema that tends to run in families. Common symptoms include dry, inflamed, red and itchy skin that when scratched can easily become infected. 

Sebhorreic dermatitis: a condition which causes red, itchy, flaky and scaly skin that affects the head, face and torso. In severe cases it can also lead to hair loss.

 

Contact dermatitis: an inflammation of the skin caused by the skin coming into contact with a certain substance. The skin will become itchy, red and at times dry and cracked. 

Neurodermatitis: a condition that creates an intense, unreachable itch. This inevitably creates an almost escapable itch-scratch-itch cycle, once the skin is scratched, the intensity of the itch increases. The scratching then potential leads to red, broken skin.

Dyshidrotic: a blistering rash, that appears on the palms of the hands and soles of the feet (looks like tapioca)

Jenny hasn't quite got the full collection, there a several common forms of eczema such as discoid, gravitational and asteatotic, as well as some rarer variations which she has been fortunate enough to have been free from. 

The combination of all these different conditions requires an extensive treatment and management routine. Currently on a daily basis Jenny uses Epaderm, Hydroxyzine, Fexofenadine, Chlorphenamine, White soft paraffin, Singulair, Ventolin and Aciclovir. The photo below was taken several months ago, but is a good representation of the amount of medication on hand.

  

The list of treatments that she has tried is even more extensive: steroid creams (in varying strengths), emollients, wet wraps, antihistamines, Protopic, Patch testing, IgE testing, Thrush cream, immunosuppressants inc; Ciclosporin, Azathioprine, Mycophenolate Motefil, Methotrexate, Singulair, light treatment, oral steroids, antibiotics, anti-scratch mittens, salicylate diet, chromate diet, avoidance, hypnotherapy and many others.

These medications can cause a whole host of different problems however. In the past year Jenny has contracted Eczema Herpeticum seven times as a result of her severely weakened immune system. Eczema Herpeticum is caused by the same virus that causes coldsores, that spreads through infected eczema and if left untreated can lead to organ failure. 

Her most recent bout was little over a month ago and was the most severe yet. What started as a slightly red eye on Saturday had spread to cover her entire face by the evening, until she was admitted to hospital on the Sunday where she remained until Friday.

Since I began this 1000km challenge and we both began to engage with the online chronic illness and eczema communities more, we discovered 'Red Skin Syndrome' and the fact that Jenny's suffering may not be the cause of her eczema, but rather the medication she is using to treat it.

Red Skin Syndrome is caused by an addiction to topical steroids, prescribed to rid the patient of their eczema. As the creams are applied they appear to work for a period of time before the eczema comes back, and more and more steroid creams are prescribed of increasing strength, until the patient's skin becomes addicted. The condition was discovered by Dr. Rapaport and is supported by just a handful of physicians across the globe, which begs the question as to why few seem open to the idea. Speaking to others, and from our own experience we have come across doctors who dismiss the idea that the suffering can be caused by something so simple. Whether this is stubbornness borne from a lack of faith in other's diagnosis or fear of inadvertently mistreating hundreds of patients is uncertain.

I have read numerous claims that adult eczema has only become a 'thing' in recent years, as it is typically a condition that only affects children, although I have been unable to find evidence backing this up. The truth is we both remain a little sceptical and we won't really know if it will work until Jenny has been through the withdrawal process. 

It wasn't an easy decision to make, but after months of deliberation Jenny decided to go 'cold turkey' on steroid creams around the middle of May. When you've exhausted all other methods of treatment multiple times any new treatment is seen as fresh hope. The withdrawal process is reported as being very tough and the most physically and mentally challenging period many fellow chronic eczema sufferers have been through. We saw the effects of the withdrawal almost instantly when Jenny spent a week in hospital with Eczema Herpeticum and the photo above was taken a week ago in the morning when Jenny woke to find her skin had essentially burst open in her sleep.

Many have been confused by the decision we have made, at times thinking it is almost wreckless. In truth we felt like we had little choice, no matter how long we waited we would have never have been mentally and physically prepared for what the next few months will bring. For as much respect and positive words I receive this year for my running I have to direct that all towards Jenny. It would have been relatively easy for me to make the decision on the withdrawal, but Jenny has been the driving force behind it despite knowing what the difficulty she will face. That courage will only serve as motivation for me and the rest of my races this year.

This all leads to a frustrating series of what if scenarios. What if this 'adult eczema' can be cured by not using steroid creams? What if sufferers with 'adult eczema' would have simply grown out of their eczema as a child, as they were told, had they never used steroid creams? What if all those years of suffering with unbearable, at times, untreatable skin could have easily been prevented?

This year I am hoping to find the answers to some of these questions. In truth, even if this 'holy grail' cure does work, there will still be a little bit of scepticism in me about it, perhaps because the answer is so simple. A lot of research will need to be done, by those much cleverer than myself, into the exact hows and whys. A recent scientific discovery has uncovered the gene responsible for eczema, leading to the hope that this will advance the search for a cure and help develop better treatments for sufferers.

It is my wish that my fundraising will go a long way to help this search, by raising as much money as I can for the National Eczema Society.

Again, this post wasn't written to try and make you feel sorry for Jenny or myself, rather to just help people learn a bit more about a condition they were already aware of, whilst also giving some explanation behind my motivation for running 1000km this year.

I just want to bring a smile to this beautiful face and end Jenny's suffering.

If you wish to find out more, please either visit Jenny's blog I Have Eczema, click the email icon to the right or leave a comment below.

Thank you