Skin on Fire is a documentary short film about Topical Steroid Addiction (TSA) and Topical Steroid Withdrawal Syndrome (TSWS).
Through the heartbreaking, inspiring stories of diverse individuals who have suffered from TSWS, the film shows their suffering is undoubtedly from a legitimate condition, and the respected medical experts who weigh in offer viewers a better understanding of why someone may develop TSWS, what can be done to prevent it, and what new treatments may be on the horizon. Visit www.skinonfiredoc.com for more information.
You can watch it here:
So what did I think about the Skin on Fire documentary?
It’s a relatively short film at just under 30 minutes so they’ve crammed an awful lot into a short space of time.
I have very mixed feelings and at the risk of upsetting people I’m going to just let rip. This is my blog, my opinions so if you don’t like it, apologies and please comment below. I’d love to discuss all of what I’m about to say.
What is TSWS?
Firstly they call it TSWS – I can’t get behind this. I don’t get TSW really because it really doesn’t explain fully what the condition is because this isn’t just topical. People can become addicted to oral steroids and immunosuppressants like Protopic. This isn’t the fault of the producers, as a community and as medical professionals, we need to find a word that makes sense of what’s happening. Dr Heba has discussed this in the past… we need a new word!
Shocking that America don’t recognise TSW
I have mixed feelings, but mostly I do feel that it’s a very positive step forwards. I cried as I watched and wept at the end, the film is dedicated to a man called Eric who died due to complications from Topical Steroid Withdrawal. Utterly heart-breaking.
Marvin Rappaport is just incredible. When John went to see him he explained “You’re going to be just fine. We got a long trip and it’s gonna be a tough trip. I’m here for you and my main job is make sure you don’t kill yourself. I’ll keep you alive.” it made me feel so sad, but so seen and understood. This doctor understands, he gets it and after years of treating people with eczema he knows that unfortunately, the only way to heal is go through withdrawal and there is no quick fix or short cut for this. It can take years.
His words, “You will recover..” give me hope.
He also explains that most adults don’t have eczema at all, just topical steroid addiction, which makes the skin condition spread, worsen and become dependent on stronger and stronger suppression medication.
It was great to see so many different patients represented and I loved hearing their experiences, how many things were similar, how lonely, desperate and in pain they all felt. How most of them did not get help from doctors. This needs to change.
STOP gaslighting us… please!
What I didn’t like were the two black clad male nurses. Dr Shah who has a huge following online, who I felt were both implying that if used correctly topical steroids are safe, that they will continue to prescribe them… well if that’s the case have we learnt nothing? I didn’t feel that those two were really on board, that they blamed patients for being ill with withdrawal.
If they keep saying that no doctor is going to change what they do and they will continue to think this isn’t their problem. We need urgency, we need some serious straight talking and we need doctors to listen to us.
This is what they said:
Topical Steroids are Very very effective – when used correctly
We use them because the provide effective and consistent results
It’s uncommon…(meaning TSW)
Alternative treatments will help people bridge TSW
Most of us are here despite following advice given to use by GPs and dermatologists. Some admit they over used topical steroids but here’s the thing – why are they able to? Who checks the frequency of use? It can’t still be the patients fault, the system has failed us all.
There was a woman in a white coat, I haven’t made a note of her name, because she also confused me and made me feel on edge and defensive. All the seemed to be saying was that we were often emotional and anxious about the rash on our face… well yes… we are! Because this far more than a red rash on our faces, it’s all over our bodies, it’s nerve pain, bone deep itch, lack of sleep, anxiety, oedema, excessive flaking… and more. We need help with that, psychological therapy and guidance, not just a half smile. I’m probably being really harsh but I didn’t warm to her.
I also feel worried that the end of the film points to new treatments. There are no new treatments that give me any hope – they are ALL drugs that suppress the immune system. We need drastic change to how we diagnose and treat eczema in future. We need a more holistic approach and to use natural remedies and creams to treat mild rashes. We need to stop treating mild eczema with potentially dangerous topical steroids.
One common theme was how mild eczema was treated, often with very strong topical steroids and from that point on the problem has begun. You flare again once you’re addicted and have to get stronger and stronger medication and doctors, apart from Dr Marvin Rappaport, seem to ignore these warning signals and keep on prescribing and telling people to use more medication.
They did both redeem themselves later in the documentary but by using the language they use above, they make us feel like it’s our fault.
I worry also that TSW is not rare, just undiagnosed and that the new treatments are another band aid and will ultimately just delay healing and damage further. Certainly using Methotrexate was a short lived solution for me and in the end made me very sick.
I did enjoy the film but also felt sad that still the old messages slip in. It’s our fault, if we used them correctly we’d be OK. That it’s eczema, that word is used so often and it’s confusing the issue. I don’t have eczema at all, I now have a full body iatrogenic condition caused by topical steroids.
I do feel hopeful that it will help raise awareness of the heart break and suffering caused by Topical Steroid Withdrawal. Hopefully others will recognise themselves in the people in this documentary and begin researching TSA and TSW and find healing. I also hope it will make others question whether they need to use topical steroids.
It was interesting to hear that the strength of topical has increased in potency by over 600% – that’s insane!
Before the 1970’s kids would grow out of eczema. It used to be mild and never when into the red phase – Marvin Rappaport
Well done to everyone who took part including fellow TSW warriors who I know from the online TSW community: Linette Roungchun, Kai Clark, Lauren Du Pree, Luke Jacobsma and all the other people sharing their stories. Thank you all from the bottom of my heart.
Thanks also to the producers. It is a great documentary and will hopefully help to raise awareness
I guess I’m just being critical because those phrases used trigger me. They make me feel blamed and ignored. They make me feel like this terrible condition still isn’t being taken seriously enough.
How can dermatologist sleep at night? Do they really all think that this is not real? If I was a dermatologist and had any doubt a medication I prescribed had such disastrous side effects I would start to research and start to listen to patients and question what I knew.
Doctors should first do no harm. But Doctors have harmed me and thousands of others and they don’t even know about it. They don’t listen and they don’t care.
We need change and hopefully this documentary is part of that change. Change is coming.
I’d love to know your thoughts on the documentary. Please share them below.
For more information:
- Visit the ITSAN – The Topical Steroid Withdrawal Syndrome Charity
- Follow Scratch That – a voluntary UK charity run by fellow TSW warriors and survivors