National Eczema Week: What if everything you thought you knew was a lie?

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 from a new one from myself on the subject of Red Skin Syndrome and how sometimes the correct answer might just be the simplest one.

What if I told you everything you thought you knew was a lie? That North was South, green was actually a slightly purply colour, Mullets were terrible haircuts and that the medication you have been using to treat a condition has in fact made you worse and forced you to develop a worse condition that what it was being used to treat.

You would be confused and frustrated right?

3 and a half years of Wild Goose Chases

The above photo was taken by Jenny on her latest Dermatology appointment, it represents just three and a half years of hundreds of hospital appointments, test results and general notes since she moved to Lincoln. In just three and a half years of living here she has managed to have a file big enough to hold open most doors. Yet despite the supposed wealth of information between those folders whilst Jenny has been living in Lincoln her condition has got much worse, rather than better. Diagnosis' have been made, medication of increasing strengths prescribed but whilst things may improve for a brief period of time, the symptoms would soon come back and often much worse.

As with most things in life there comes a breaking point where something happens that either pushes you over the edge or forces you into action. I've mentioned this plenty of times in previous posts before, but this whole fundraising effort this year was born out of such a moment, when we had both reached, what we thought at the time, was an all time low with her health. At the beginning of the year I convinced Jenny to start blogging about her condition, to help me with my quest to raise awareness this year but also to help herself and others like her.

The response was almost immediate, friends who had no idea of the true extent of her condition were taken aback and more importantly, strangers reached out to her as they realised that they weren't alone. As the weeks went on one term seemed to crop up again and again from readers, 'Red Skin Syndrome', until it eventually became deafening. In short the suggestion from numerous readers was that the condition that Jenny was suffering from wasn't Adult Atopic Eczema, but rather 'Topical Steroid Addiction', meaning that her skin was addicted to the very creams she had been liberally applying in a quest to get better. I guess one way of looking at it is to think of it as the medical equivalent of painting over a crack in the wall. Sure, the crack will 'disappear', but it's not actually fixing the problem and it will continue to get worse until it is much, much more difficult to fix. The solution was to simply stop applying these creams and then with time you would be 'cured'. This seemed like being handed a 'golden ticket', after years of suffering could the answer really be that simple?

Not quite. The 'withdrawal' process that all those who stop using steroid creams go through is horrific and can last anything from a few months to a couple of years. When we first came across the term we spent hours looking through some of the sufferer's blogs both shocked at the pain that the people were going through and comforted by the fact that without fail they all described the same set of symptoms which matched up to Jenny's. The recurrent symptoms that we found included: red burning skin, intense itching, dry flaking skin, oozing skin, rashes/hives, difficulty regulating body temperature, exhaustion, insomnia, loss of appetite.

To find out a more about 'Red Skin Syndrome' including the science behind it, how to spot symptoms and the 'treatment' check out the brilliant video below.

Or for a more relaxed, Northern and comedic approach watch Jo's (Miss Kitty Fantastico) video on the history of her condition and treatment below.

Without even trying to dig too hard I was able to create a list of the following red skin bloggers:  Pinklikeabeacon, A Little Itchy, Topical Steroid Withdrawal (Juliana), Topical Steroid Withdrawal (Louise UK), Topical Steroid Withdrawal // Red Skin Syndome, Stopping Topical Steroids, Get thee hence Eczema, Living With Eczema, Red Skin Recovery Diary, The Open Door, Skin of Rose, A Steroid Free Life, No More Steroids, Miss Kitty Fantastico Defeats Eczema, Steroid Free Skin, Healing the Red, Journey to Curing Eczema, And the Earth Shook, Eczema Excellence, Going Natural Mum, Eczemancipated, Tomato Skin Girl, TSW Journey, The Boy, the Greek Fire and me, Laleizel, Eczema or Not, Boy vs Self, Topical Steroid Withdrawal Journey, Steroid Cream Withdrawal, 35 Years of Hell, Itchy, Red and Miserable, This Itchy Life, Eczema in Hong Kong, Eczema Struggles, Elizabethssite, Eczema Healing, Scratchy Monster, Topical Steroid Addiction and Cure, Topical Steroid Withdrawal Sucks and Curing Red Skin Syndrome.

If so many people are willing to put themselves through such pain you'd like to think that there is something to it, at the very least it shows the desperate situation that many eczema sufferer's find themselves in to even entertain such a radical treatment. Earlier in the year we decided we had enough evidence to begin the 'withdrawal' process, Jenny's health wasn't getting any better after exhausting all other types of treatment and medication it seemed like the only thing left to try. The decision was met with some scepticism from friends and family as it goes against the 'expert knowledge' of the vast majority of dermatologists out there but in truth it really felt like we had no choice.

"Inside every cynical person, there is a disappointed idealist."

Over the past few months I have come across some (un)healthy scepticism about the motivations of doctors and the mysterious 'financed by corticosteroid company(ies)' shaped shadow hanging over them, but this is something I'm neither prepared or educated enough about the situation to pass comment on. Maybe it is because I'm an idealist but I'd like to dismiss such 'crazy talk' as just that, but in truth I am also as cynical as they come.

I can't help but get angry when I read about how doctor's choose to specialise in the dermatology, not because they have a genuine interest in the subject, but because of the perk's of more time off or better pay, even if it means specialising in something that 'isn't important'. There I go, getting all angry and cynical when I said I wouldn't.

Jenny's decision to stop using steroid creams and go against the advice of her dermatologist was naturally a bit of a confrontational issue at her hospital appointments. In fairness I imagine there is nothing more frustrating for a doctor than the patient trying to over diagnose themselves, when true answer is much simpler. Also for a dermatologist to be told that the reason that their patients are ill and/or getting worse is because of their incorrect diagnosis must be hard to take, and I imagine that is why so many seem unwilling to listen. It can't be easy to be told that you are the reason someone has been going through years of suffering. Telling a dermatologist that their 'magical steroid creams' aren't actually able to make their patients better but are the sole reason they are getting worse is akin to the reaction when Christopher Columbus claimed the world was round*.

*OK, OK, I know the proof that that actually happened is flaky at best (non-intended eczema joke), but I'm making an analogy here so bear with me.

Even though Jenny went armed to her dermatology appointments with the published papers from Dr. Rapaport, the Doctor who termed the condition 'Red Skin Syndrome', these were dismissed outright without even bothering to read them. When Jenny even suggested checking the blog that she had been writing for the majority of the year, or even those from other fellow sufferers it was disregarded as the Doctor didn't like using computers.

As someone who has heavily integrated technology into their life it always confuses me when others are so unwilling to embrace technology into their life, it is however completely acceptable. However when a doctor almost outright refuses to use technology when their job pretty much demands it, I find that very frustrating. If all doctors had the same approach to technology and trying out 'radical' new treatment ideas we would still be drilling holes in people's heads.

Got a headache?
How about I drill a hole into your skull to make you feel better?

Something I feel that doctors almost seem to forget how much patients with a chronic illness rely on them for just that little bit of hope and how they can hang on their every word. As I've said I don't envy the difficulty of the jobs that doctors face on a daily basis, but, and probably simply because of how often Jenny has to go to hospital or the doctors, the number of times she has had some laughable and at times shocking experiences is crazy with misdiagnosis.

Personally I'm still a little bit sceptical about 'Red Skin Syndrome', there is always the danger of convincing yourself that something makes sense because you are desperate for it to. After years of numerous different diagnosis's, cycles of different medication and scores of hospital trips, we are both just desperate for any hint of a cure, no matter what it actually means.

It would be devastating to put so much emotional investment into a cure that could turn out to not exist, so for the sake of coping with the situation afterwards should after months or years of suffering Jenny's health not improve I have to remain slightly sceptical.

GUEST POST: Living With Eczema: Part 1

As with any illness eczema can range from mild, moderate to severe but not many people seem to realise this. Here, I'd like to make a series of posts to talk about how eczema as a condition can be debilitating; making leading a "normal" life difficult.

I'll start off with my daily routine. It consists of waking up, often having to pry open swollen eyelids that have wept and become stuck together during the night, deciphering how much agony I'm in, and looking in the mirror to see the extent of the damage. The looking in the mirror part isn't the most constructive thing to do, but helps me to understand why I'm experiencing a certain amount of pain.

Next I'll pill pop some antihistamines and hop in the shower after I've slowly prised clothing, and even my hair, off my body that has become stuck to weeping sores. Depending on exactly how my skin is, a hot shower might be necessary to get rid of the stinging the water creates as it hits open sores from nightly scratching. Doctors always advise against this as hot water dries out the skin, but I find it helpful to give me some form of respite from the pain. It can take me hours just to shower when I'm in a bad way. Not just because of the pain or the worry of the pain, but because being as relaxed as I can be is beneficial for my skin. I find my only way to truly relax is to lay in the bath tub with the shower on my feet. Not exactly the best when the water bill needs paying, but I find bathing doesn't quite work for me.

After liberally applying Hydromol I get out and after getting dry enough, immediately slather my skin in white soft paraffin. It can take hours for the white soft paraffin to soak into my skin but I find that if I don't apply enough it just gets so sore and dry. Given the thickness of this ointment is a bit worrying that it still dries out my skin! If it's a particularly bad day I'll just whip out some Hydrocortisone, Eumovate or Betnovate steroid cream and even have to apply this to my face on a very regular basis. I haven't experienced any thinning of the skin per say, and have been doing this for more than 10 years.

On the days that my skin is so bad I often find that I can't actually get myself dressed because it is so sore, and covering myself up with clothing just exacerbates this. Instead I find I heal faster if I stay naked in a regulated temperature, applying white soft paraffin regularly throughout the day. Because I have to do this to cope, I find myself becoming increasingly lonely as I can't have visitors seeing me in this way. It also means that I am often off work ill due to my inability to get dressed, and the soreness would obviously prevent me from going.

Work have luckily been quite understanding and allow me to take shift swaps or holidays if I need it. This does however mean that I will never be able to withstand a full time job because I would require far too much time off. I'm happy with working short hours at one end of the week as the time around it allow for more recovery periods as it can take me hours and hours just to get myself ready to go somewhere.

I miss the days where I could get up at 8am, take a quick shower, or not even shower at all, just have a quick wash and be able to be ready to be somewhere for 9am. Nowadays I tend to wake up at 5:30/6am to ensure I can be ready for such a time. I envy those people who can just pop to the shop for some milk first thing in a morning, it just wouldn't be possible for me to do this. And it's such a simple thing. People take their quick routines for granted, not having to worry about the implications things can have on their health. I have to think about how I will dress that day not because of the weather, but what my skin dictates itself to feel most comfortable in.


I thought I'd also include this extract I wrote in an email to a friend when I was feeling particularly down as it gives an even better stand point:

"I just really am coming to the end of my tether with all this. One day I'll wake up and be absolutely fine, the next without warning I am so ill that I need emergency medical help. I'm not sure how much longer I can go on with this for. It impacts every single aspect of my life. Getting washed and dressed on a bad day can be one hell of a chore, not to mention time consuming and completely energy-zapping. Then there's work. No one wants an unreliable colleague, no matter how much they say they've got your back and wouldn't want to see you have to leave because you're a hard worker and you do a good job of it. But you're only a hard worker when you are well, that is the fine detail. My love life suffers greatly as well. Most days I can't even let Shane get close to me, or even to brush passed me accidently because it can trigger my skin to flare up, which sometimes means he will sleep downstairs, despite us having a king size bed because I just can't bare the extra warmth. I can't see my mum as often as I'd like because of my severe allergies to the animals. I can't even enjoy my hobbies any more because I'm allergic to textiles and of course, dust. Which in turn means, all my dreams and ambitions have had to come to a complete halt until my health improves, which seems ever unlikely with each passing day. I have to cancel so many plans and trips, which has meant losing many friends along the way as well.

I do try to keep optimistic with everything by being realistic but it is so terribly difficult when your illness defines you because there's no way you can bypass it. It can only be managed and coped with so much until you lose your motivation for everything, which I have done so many times now."

It's a tough life when the hard times take over.