TSW Event Report from Japan!

How do you get information on TSW? I'm pretty sure for most people it came from the internet. I myself gathered information on TSW solely from the internet for many years, and from some books more recently.
 

But this time, I got a chance to learn about TSW from dermatologists at a lecture event! Atopic, which is a TSW patients' organisation, holds free lecture events by TSW doctors regularly. In fact, the one I attended was their 24th event. It was divided into two parts to meet the audience's needs - the first half for child patients and the second half for adult patients. I only attended the second one, which lasted for 3 hours. It was very practical and full of useful information.

In this post, I would like to report on the event to fellow skin warriors.

The 24th Lecture Presentation on Atopic Dermatitis in Tokyo

First of all, there were 4 working dermatologists as speakers - Dr. Kenji Sato, Dr. Mitsuko Sato, Dr. Shigeki Fujisawa and Dr. Satoko Minaguchi. All of them have been offering the TSW treatment to patients.

On arrival, I was given with a welcome set of documents on TSW, which was surprisingly detailed. 

Each doctor gave a presentation with slides, except Dr. Mitsuko Sato (she gave her presentation in the first part of the event). The message of their presentations was very clear.  That is, the topical corticosteroids addiction is very real and TSW is the method to get rid of it.  Of course, there was data and statistics to back up their voice.

Despite there was a big typhoon hit Tokyo on that day, 237 people attended the event.

How effective are Topical Steroids on Atopic Dermatitis?

Dr. Kenji Sato showed data from a research paper by Dr. Furue, who is the main author of Atopic Dermatitis Treatment Guideline in Japan (this is the official guideline that sets TS first-line in the country). Dr. Sato said that information on the guideline indicate no valid source. He looked up Dr. Furue's past paper to find justification for the standardised TS-based treatment for AD. 

Dr. Furue's investigated how the severity of AD changed by using TS for 6 months (Furue M et al, Br J Dermatol 2003; 148: 128-133).  He tested on 1240 patients, a large number for a medical research.

Dr. Sato simplified the result data as follows.

Among 1240 patients :
- 38% of them saw their atopic dermatitis subsided.
- 59% of them saw no change.
- 3 % of them actually got their atopic dermatitis worse.
- None of their atopic dermatitis cured.

None of their atopic dermatitis cured after 6 months use of TS.  So, to start with, TS isn't something to 'cure' your eczema. Alright, you might have already known that as the medical leaflets say so these days (not in Japan though), although doctors usually don't make it so clear. What I didn't know was that TS don't even relieve your eczema often. I wonder if some of the test participants have developed tolerance on TS so that TS didn't work so well. Anyway, I found this result shocking. 

Dr. Sato's Rate of Healing on TSW 

Dr. Kenji Sato giving his presentation.

When you're going through or thinking of starting TSW, one question always floats on your mind.

"Does this really work?"
 
Do you have the same question? Good news! Dr. Sato presented a rate of healing on TSW at his hospital during his presentation. 

He collected data from 360 patients over the age of 3. 

The indication of 'healing' he set was 'to be able to return to the social, work or school life".

Here is the result.

Among 360 patients :

- 2 people started using topical corticosteroids again.

- 7 people left his hospital. (Dr. Sato explained that some cases were because they didn't get along with other inpatients.)

- The rest of them made it to healing.

To put it simply, 97.5% of his patients recovered enough to have their normal lives back after going through TSW.

I thought that this rate of healing was really encouraging and definitely something everyone was waiting to hear.  But strangely, the result somehow looked too good to me so that I wasn't sure if I could trust the figure. (Sorry for being a doubter, but doubting doctors was something I had to learn from TSW.)  I read a lot of blogs on TSW and my impression on its success rate wasn't that high.  In the end, I decided to trust this data though.  I will explain the reason later.

Moisturiser withdrawal is 'usually essential'

Dr. Kenji Sato explaining on moisturiser withdrawal

Next, there is something I need to mention here. Because this made me realise that I needed to correct one of my old blog posts.  It is about moisturiser withdrawal (if you never heard of it, see my old post here).

I personally have an impression that moisturiser withdrawal is still seen as an unfamiliar idea even among TSW patients.  However, the doctors on the event all agreed that moisturiser withdrawal was 'usually essential' rather than 'encouraged'.  I knew it was a good thing to do, but thought it was optional at the time I wrote the post.  They explained that only about 10% of TSW patients healed without moisturiser withdrawal, and they were all mild case patients.  TSW patients who recover well are usually doing moisturiser withdrawal strictly, according to the doctors.  Even children can be addicted to moisturisers.  Dr. Sato said that wiping off oozing or picking up scabs could be 'moisturisers' to your skin.   

Atopic dermatitis heals naturally

Next, I would like to share how the TSW doctors saw simple atopic dermatitis.  All of them agreed that simple atopic dermatitis needed no specific treatment.  They said that the nature of simple atopic dermatitis was 'healing naturally'.  Dr. Fujisawa expressed this in an interesting way - "Let your brain recognise the error(=atopic dermatitis). It will correct the problem on its own. But if you use topical steroids, your brain cannot see it as a problem! "

ITSAN debut in Japan and other stuff 

The ITSAN video shown during the event.

The lovely ITSAN video and message from Mrs.Kelly Palace were shown during the event.  It was nice to see ITSAN and Atopic teaming up to raise awareness of topical steroid addiction.  The doctors and Atopic members said that they were happy that the problems of TS were more and more recognised around the world.

After the doctors' presentations, two of TSW patients talked about their experiences on withdrawal.  They were both hospitalised at Hannan Chuo Hospital, where Dr. Kenji Sato worked.  They went through horrific experiences just like many of us, but said that being hospitalised and making friends who were also TSW sufferers helped them a lot. 

What really impressed me on the day

I think I should mention how Dr. Sato's rate of healing became convincing to me.  I am not medically educated, so I cannot examine the data from a medical or clinical perspective. 

After the lecture event, I had a chance to attend the post-event party at a pub.  There were 70 people and 90% of them were Dr. Satos' ex-patients.  I talked with some of them who went through TSW.  Their skin looked so good and beautiful, I couldn't tell if they ever had eczema or went through TSW from their appearance!  There were some people with eczema or withdrawal symptoms too, but they all looked happy.  They didn't look like someone lonely, miserable and depressed  - like I was, until only a few months ago.  They said to me that they were grateful for the TSW method and Dr. Satos.

Meeting a number of his ex-patients, who successfully got over with topical steroid addiction and withdrawal, convinced me that TSW does really work for many people.  And, by the end of the day I wasn't so surprised that 97.5% of the patients healed after TSW - because I saw lots of the evidences.  Witnessing many successful cases of TSW and moisturiser withdrawal was the most impressive thing of the day to me.

On a personal note...

I have never seen such beloved doctors like Dr. Kenji and Mitsuko Sato in my life.

I saw their ex-patients constantly come up to them and cheerfully tell how they were getting on with their lives after TSW.  Dr. Satos listened to them nodding and smiling.  Some of his ex-patients told me that Dr. Satos were funny, modest and a bit like psychotherapists - they tried to understand the patients mentally as well as physically.  I saw a strong bond between the doctors and the patients.

Before I left the after-event party,  I asked Dr. Kenji Sato when he started to treat people with TSW.  He answered, "It was 30 years ago."  I follow his blog and read his books, but he never mentioned such long history of his TSW career as far as I remember.

Some links to share

If you are interested in Atopic, who organised the event, there is Facebook page.

https://www.facebook.com/atopic.info

It's currently Japanese only, but you can see some pics of their meetings and success stories.
Their event schedule is also posted on the timeline.

Atopic has their official website too (also in Japanese only).  There is a forum, Dr. Satos' blogs, TSW patients blogs etc.

http://atopic.info/

Also, I just noticed that Atopic started a petition to revise the Atopic Dermatitis Treatment Guideline in Japan here. 

The petition is for :

1. To revise the guideline to allow non-TS and non-immunosuppressant treatments for Atopic Dermatitis when TS-based treatments show no improvements.
2.  To revise the guideline to acknowledge the existences of TS/Protopic/moisturiser addictions.
3.  Minimal use of TS and Protopic on child patients.

Unfortunately the petition page is only in Japanese. If you happen to read Japanese, I would be grateful if you could sign the petition (only if you agree of course!).

I hope I could share some essence of the event in this post.

Lots of love and healing to everyone.

xxx