17 Sep 2013

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:  PinklikeabeaconA Little ItchyTopical Steroid Withdrawal (Juliana)Topical Steroid Withdrawal (Louise UK)Topical Steroid Withdrawal // Red Skin SyndomeStopping Topical SteroidsGet thee hence EczemaLiving With EczemaRed Skin Recovery DiaryThe Open DoorSkin of RoseA Steroid Free LifeNo More SteroidsMiss Kitty Fantastico Defeats EczemaSteroid Free SkinHealing the RedJourney to Curing EczemaAnd the Earth ShookEczema ExcellenceGoing Natural MumEczemancipatedTomato Skin GirlTSW JourneyThe Boy, the Greek Fire and meLaleizelEczema or NotBoy vs SelfTopical Steroid Withdrawal JourneySteroid Cream Withdrawal35 Years of HellItchy, Red and MiserableThis Itchy LifeEczema in Hong KongEczema StrugglesElizabethssiteEczema HealingScratchy MonsterTopical Steroid Addiction and CureTopical 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.

1 comment:

  1. I think to be a little bit sympathetic towards derms and docs in general (and believe me when I say it is not my natural position) I am becoming more and more concerned about the alltrials situation, it *could* also be that out docs and derms are being misled by incorrect and outdated trial data, or even worse, that side effects are considered to be secret (http://www.collective-evolution.com/2013/09/04/major-pharmaceutical-company-wants-to-block-access-to-clinical-trial-data-of-their-drugs-in-fear-of-profit-loss/#_) having said that I do just wish that sometimes derms would just listen to the patients, I was actually told once just to do as I was told, as the guy was the best in the business and that he was not interested in anything I had to say. People like that should get a new career in my opinion. Here is the all trials site for more info http://www.alltrials.net/