I got an interview with Ms Marlene Diana Bell who works for disseminating NMT (No Moisturizing Treatment) protocol for TSW (Topical Steroid Withdrawal) sufferers from Canada to the world.
Her husband, Tom, had a severe reaction to steroid creams last year. Per her explanation, he spent 9 months as an invalid – with skin (the largest organ in the body) very compromised indeed – red skin, sores, ooze, crusts, flake, torturous itch, etc…
Specialists could not help, so like all desperate souls, they were doing serious Facebook search that led them to a google doctor type of cure.
They madly searched, searched and searched…..and finally found my blog and Dr. Kenji Sato‘s protocol, NMT, via the ITSAN (International Topical Steroid Withdrawal Association) support group.
They learned NMT seriously reading my blog over and over and followed Dr. Sato’s protocol strictly. When they felt anxiety or got scared of flares, etc…they just read my blog again to make sure if they are on a right course…then, finally…Tom was healed completely within 4 months! Significant thing is, he is in the middle of his 80s!
The following Q & A interview will give you insight into my personal experience as a patient of Dr. Kenji Sato. He is a leading NMT dermatologist and I am one of his many healed patients.
Our dream is to help disseminate the information to as many professionals and sufferers as possible.
◆ONLINE INTERVIEW WITH TOKUKO BY MARLENE DIANA BELL◆
MARLENE: The name Tokuko comes up frequently on many sites connected with TSW (Topical Steroid Withdrawal). You are definitely a “woman of mystery!” You went into the hospital on October 5, 2015 with a very severe case of TSW that had been misdiagnosed as aggravation of atopic dermatitis. After starting NMT (No Moisturizing Treatment), I believe that you left on December 18, 2015 with a new lease on life and a determination to share your healing with the world.
The blog article “How to Get Over Topical Steroid Withdrawal ASAP” How to get over Topical Steroid Withdrawal asap! has been shared hundreds-thousands of times in Japanese and English.
(Blog ” Tokuko’s Room To Feel Uplifted: MENU【POSTS IN ENGLISH】)
In a letter to you dated on the 25th of November 2017, Dr. Kenji Sato expressed his thanks to you for introducing his treatment protocol. He hoped that people all over the world suffering from topical steroid withdrawal would be helped. Well, Tokuko, now a year and a half later, Dr. Sato’s wish has definitely come true. It is happening because of you!!!
Look at the facts: Your blog has been seen more than 260,000 times, your Education Group has over 1500 members within months after inception, and your Healed Club has over 400 members within a few months, your NMT friends who started the Q & A Support Group for NMT-TSW now have 685 members (As of 04 Aug 2019). More and more people are asking “What is NMT? You are not alone now – and you have acquired many warriors! (Edit: As of Jan 2020, numbers above grew twofold! Amazingly fast!)
TOKUKO: Well, I began to prepare the Education site a few months prior to starting it in December 2018. It may look easy to start a group in Facebook but to utilize it as a way of sharing Dr. Sato’s protocol so accurately, it took time for me to prepare. I wanted sufferers to use ‘NMT Education Group’ NMT (No Moisturizing Treatment) Education Group instead of their NMT text book because there are no translated ones in the world.
As you know, Facebook is a communication tool so it was a challenge trying to change members’ vision from Q & A format to a study forum. I needed to think deeply on how to operate it to help out sufferers efficiently by imagining various situation that might happen.
To make the group like an intensive course of NMT, it should be full of helpful information to learn and shouldn’t have the distraction of personal symptom’s continuous complaints or its Q & A or open discussion or debate.
Of course, such things also are necessary sometimes for sufferers so I’m not denying them but I thought if I do the same thing with other TSW support groups, there would be no place to learn NMT seriously and intensively. Each group has its own role so the idea to comfort and vent are also necessary but I needed to make a place to learn NMT for sufferers in need.
Even in the hospital, no one could master NMT overnight just reading Dr. Sato’s book but inpatients get to know it little by little receiving advice from Dr. Sato every day. Sufferers in our group need such circumstances, I mean, they also need to learn it one step at a time getting advice sometimes. The group can provide opportunities to review each one’s knowledge and it definitely helps sufferers for faster healing because NMT should be done correctly and thoroughly. Sufferers who try to do NMT at home definitely have to study hard and our group should be their NMT book to find out answers by themselves.
“At least one Education Group is necessary to get accurate advice.”…That is my concept of starting the group.
MARLENE: The questions and comments in the letters on your 2017 blog are the same ones that sufferers are asking today. You have addressed them many times. Is this why you started the NMT (No Moisturizing Treatment) Education Group?
TOKUKO: Well, right after I published ‘How to Get Over Topical Steroid Withdrawal ASAP’, the article was spread to the entire world VERY rapidly…so many people started to share it one after another and the entire white world map of my blog data page was filled in color.
Then, approximate 2 months later, I started to receive MANY messages with appreciation from all over the world and it increased day by day. Do you know what I mean? Yes, a lot of TSW sufferers began to be healed or improved with the protocol! They accomplished it just reading the article and followed the direction thoroughly. And the trend is continuing, I mean, readers all over the world have been sharing it even now every day.
At the same time, I received many questions with the pictures of their personal symptoms though I’m not a doctor…lol Of course, I can’t diagnose!…lol I just can share things what I learned as an experiencer.
And also, I received other questions too continuously. I tried to respond to everyone, for 3 digit of messages every day staying up late because I really wanted to help them. However, there is a limit to take care of everyone in the world by myself…lol I was extremely busy and didn’t have enough time to sleep…even if it is 2 a.m. here in Japan, people who contact me don’t know it and when I’m about to go to bed, I hear the ring of messages. Ping…ping….ping…lol
Still, I wasn’t able to ignore them because I fully know how tough the symptoms are. 😰
Sometimes, I wasn’t able to cut the conversation for sufferers who needed urgent help even if it was midnight here. And some needed encouragement too from me…This is the other reason that I started NMT Education Group…I needed to educate everyone at one time because more than 90 % of their questions and answers are already in blog articles!
As inpatients in Hannan Chuo Hospital, we needed to learn a lot from Dr. Sato every day even though all of us read his books. Sufferers who get information from my blog need a place to learn it too.
Since Dr. Sato’s treatment could be practiced in the home setting, and many healed sufferers on NMT post their healing journey spontaneously at other TSW support groups one after another, the membership was growing so quickly that it became impossible for me to keep up. The fact that my improved pictures from severe symptoms within 3 months also are sensational for many sufferers so such testimonies accelerated the membership too. In April, 3 new efficient members who mastered NMT with my blog and the education group joined as moderators to help transition from individual symptom posts to teaching posts that would encompass common questions.
Because of their assistance, I could focus on my role, I mean, this provided an avenue to keep readers updated on Dr. Sato’s work as well as clarify commonly asked questions. As the transition smoothed out, it allowed me more time to make specific posts as well as work on translations of sections of Dr. Sato’s book “New Edition: Treatment Derived from Clinical Observation of Prolonged Adult Atopic Dermatitis Patients – No Steroidal and No Moisturizing Treatment” (Japanese edition). I feel blessed so much!
I started “The NMT Healed Club” too https://www.facebook.com/groups/NMTHealedClub/ to show the reality of NMT during the process, and to encourage people visually showing that NMT works. The group is full of positive energy and it is good for sufferers who lost self-confidence to feel uplifted.
MARLENE: The deleting of posts led to misunderstandings with both positive and negative comments on other sites. How did you and your moderators respond to this criticism?
TOKUKO: To think about sufferers who are in the midst of serious symptoms or in emergency like life threatening cases and those who are not good at English, we have to focus on providing appropriate and accurate info only, I mean, we have to diminish their workload to read and have to save their time. They definitely urgently need help and we have to help them out from this agony devoting all our energy so I wanted to avoid continuous same explanations from the beginning.
Also, staying positive is a part of NMT so I didn’t want our group to be full of complaints about personal symptoms because it affects other sufferers’ symptoms too making them feel sad. Venting is good for the person but not good at all for all other sufferers’ symptoms. No one feels happy to read other people’s pain. We tend to be tied to our own tough symptoms but everybody should consider about other sufferers too even while experiencing terrible symptoms, I mean, we have to think about other sufferers in various situations precisely because we totally understand the pain.
It is because of these reasons, I had to organize the group to let members utilize it as a text book.
There are no translated books about NMT in the world and I had no other way to disseminate the protocol except my blog and Facebook groups. To help out each other with NMT knowledge is my ideal so when I started the group, I required agreement with our policy (with 3 initial questions) to members who requested to join us and explained to members that our operation is different from other TSW support groups.
I know it is irritating for some members to not be able to get an answer right away but no one can learn it overnight. I hope group members realize that it is really great opportunity to re-read my blog articles to find out answers….because, again, more than 90 % of members’ questions are already usually explained in articles. We tend to think we have learned things very well after we scan the information but tend to miss something important sometimes. Members might find some other helpful information while reviewing it.
As long as you chose to accomplish NMT without having NMT doctors there, I hope you understand that such effort by yourself is required.
Well, to organize the group, all moderators’ work is excellent.
When we receive the duplicated questions, they try to contact the member directly via Facebook ‘Messenger’ as much as possible and explain where the answer is written so that the member could find other missing information too to read it and other members don’t need to waste their time to re-read things that they have already mastered. Of course, if the question is new and would be helpful for others, it is reflected on the site and we’ll try to answer doing our best.
When we see members’ open discussion about other methods in our group, moderators try to contact them personally because other group members might misunderstand and think that it also was a part of NMT. To mix other methods might be dangerous sometimes. It wouldn’t be NMT anymore and healing would take longer or could cause further aggravation.
When we see someone’s post that complains about her/his symptoms, moderators try to send a message to stay present to the pain but then to delete the posts as not to affect other members’ symptoms since it is not good for others.
When we get a request for approval to join but if they didn’t answer required 3 questions, moderators send a message to request it with ‘welcome package’ to explain about NMT as a starter.
They show their journeys making videos or chronological order pictures of NMT process, etc…etc…They are amazing. Just wonderful. I can’t tell them how much I appreciate their dedication.
It is REALLY huge workload for moderators but still, they work for group members and me SO hard spending their time because they fully know how tough TSW is. I feel gratitude for their love to other sufferers and caregivers.
**At that time, there was no function of pending post option in Facebook Groups to select members’ posts. This is a definite improvement!**
MARLENE: Let’s go back to the beginning and let people know a few facts about Tokuko. Can you tell us a few details about you?
TOKUKO: I have two sons and work full time during the week for DoD. (Department of Defense, the United States Air Force.)
My oldest son is an avid NMT supporter so he willingly helps with family chores. I think all of my time except eating, cooking and taking a bath is taken by NMT. To be honest, it has been all consuming and stretches after work on weekdays and at least 10 hours a day on the weekend. I only allow 3-5 hours sleep every night on weekdays because I have various kinds of activities for NMT. It’s not only blogs and Facebook groups.
Oh, I’d like to apologize here that I can’t respond all of messages that I receive from all over the world every day. I feel so sorry for them to not be able to make it in a timely manner….still, please understand that it is difficult to respond 3 digit of messages every day. Instead, I’ll keep adding messages and information in the groups and my blog thinking about you.😊
MARLENE: What about your steroid usage? How long and how frequently did you apply topical steroid creams?
TOKUKO: My topical steroid usage was for 52 years. For 30 years, I had been using the world’s strongest steroid cream since it came on the market. Different creams were prescribed for different parts of the body. The strongest one was used on my fingers. At the time, my job took me to many cities and with my fingers looking so horrible, it was easy to get steroids at any hospital. Once creams were applied, the symptoms disappeared but quickly came back. Without the creams, it was impossible to lead an ordinary life.
Before NMT, during severe TSW, I was also prescribed a very strong immunosuppressant, ciclosporin (cyclosporine = neoral), which is usually given before undergoing internal organ transplant operations. I was taking it daily for months twice and the side effects were horrible.
MARLENE: How did you get an appointment to see Dr. Kenji Sato at Hannan Chou Hospital in Osaka, Japan?
TOKUKO: I was referred by a famous Japanese NMT dermatologist, Dr. Shigeki Fujisawa in Tokyo Japan. (Dr. Fujisawa also published books of NMT in Japanese.)
I was admitted after the third attempt with acute aggravation of the skin. The name of my primary sickness was hypoalbuminemia – an extreme loss of protein though my TSW symptom was VERY severe. It was here that Dr. Kenji Sato became my specialist in dermatology.
MARLENE: You mention that years later, at a convention, you met a young NMT doctor who remembered thinking that you would never survive this condition. He also said that he was puzzled by your happy demeanor. Why do you think you could feel so happy when faced with the horror of TSW?
TOKUKO: I enjoyed the hospital stay so much. When I entered, I made a big resolution to be a patient who has the sunniest and most upbeat disposition in the hospital…lol. I wanted to erase the bad image of hospitalization though my symptom was the worst in the hospital.
When you go in to the darkness, you should go with the light turning on. And while your symptom is the worst, if you are seen by a famous, efficient and trustful doctor, how come you need to complain? You should focus on blessings.
Patients often gathered in my hospital room and there was much laughter. It became known as “Tokuko’s Room to Feel Uplifted”. When they needed energy and laughter, they stopped by my room. When they were depressed, they wanted to talk with me. In the hospital, I had never felt down even for one second surrounded by nice friends, nurses and doctors. My heart had been filled with gratitude. In my blog, I mention “Try to feel positive in every situation. Mental status is important for the fast recovery.” and I believe it’s true.
You go on to say if you see a tiny good part, bless it. When you say, “This finger is really bad…” to someone else, you are missing something – Bless the other 9 fingers.
Smiling is not the thing you do only after you became happy. Smile first, then you can be happy. It brings you happiness! This order is important.
To be continued…..
”Tokuko Got An Interview – Part 2″
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Published: 04 Aug 2019
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