Tweet

Pocket

 <<<　Viewer Discretion Advised　>>>

Ever since I was a baby, I had severe Atopic Dermatitis.

My worried parents took me to many different doctors and hospitals hoping that I would be cured.  And when I became an adult, I went to hospitals all over Japan, committed to heal my dermatitis.
During this time, I tried numerous alternative health modalities as well.

In total, I used Topical Steroids (TS) for 52 years.
And of those years, I used the most potent one for 30 years.

Because I truly wanted to heal,
I listened to my doctor, and intently followed their treatment plans.

The Topical Steroids temporarily suppressed many of my symptoms, but with time I would need stronger prescriptions.  And in the end, even the strongest steroid creams completely stopped working.

There were doctors that would amp up my prescription as my symptoms worsened,

However, although I have used these creams for more than 50 years, my Atopic Dermatitis was not cured by Topical Steroids.

‘Doctors must never say ‘Stop itching/ Do not itch’ to the patients.  If you say this, in that instant, the trust between the patient and the doctor will be completely broken.’

Because I have experienced it, I can truly say that it is IMPOSSIBLE to control this itch, and I believe that NO HUMAN BEINGS can control it.

However, many doctors believe that to some extent, this itch can be controlled.

 

As everyone knows, you must study a ton to become a doctor.
I respect all of the doctors who have given their all to learn from books and clinical setting seeing patients.

But when a doctor says (from his understanding and his studies) ‘To a certain extent, itchiness can be controlled.’, the patient knows that ‘This doctor has never experienced what I am going through…..’

Because Dr.Sato sees the patients condition every single day at the hospital, and understands the illness and our sense of pathos, he was able to come to the conclusion that the itch cannot be controlled.

 

And for the first time, I learned from Dr.Sato that what I believed as Atopic Dermatitis was actually an Intractable Dermatopathy induced by prolonged use of Topical Steroids.  The dermatitis I was experiencing was side effect from the drugs.

 

 

In actuality, when I was flaring, it looked like as if I was being poisoned, and it was truly a horrible experience.

 

Even if you were not a medical professional, wouldn’t you feel that it was odd that you would experience these CRAZY symptoms from a simple Atopic Dermatitis?

 

Your whole body becoming raw, looking like a burned victim

 

Your face becomes extremely swollen

 

You look unrecognizable and look like a monster

 

Your skin looks like it is rotting

 

Even the simple action of changing clothes, you shed handfuls of dead skin flakes

 

All of your hair falls out…

 

These are my experiences.  I drew this cartoon for the last lecture meeting with Japanese leading doctors against Topical Steroids.  Do these symptoms Atopic Dermatitis??? No way!

Would these symptoms occur just with Atopic Dermatitis??

I believe that if I did not use Topical Steroids, even if it took time to heal, I wouldn’t have experienced these severe symptoms.

 

However, we must remember that all of our bodies have the ability to heal itself.

 

Topical Steroids may temporarily suppress symptoms, but it does not cure the condition, and will leave the patient with frightening side effects and symptoms.

 

This is the truth, and I am able to share this because I am a patient and this has been my experience.

 

 

 

☟　閲覧注意（皮膚炎の写真があります） 

 

☟　

 

☟   Viewer discretion advised:  Severe Dermatitis Pictures below

 

☟

 

☟   閲覧注意（皮膚炎の写真があります)

 

☟

 

☟   Viewer discretion advised:  Severe Dermatitis Pictures below

 

☟

 

☟   閲覧注意（皮膚炎の写真があります）

 

 

 

2015.10.29 Left Lower Leg (One month later of hospitalization)

 

 

2015.11.18 Left Lower Leg

 

 

2015.12.17 Left Lower Leg  (The symptom is about to disappear w/o TS))

　　　👇　オリジナルの記事はこちら　👇　The Original Posst in Japanese

ステロイドでアトピーは治りません

#Tokuko’s Room to Feel Uplifted    #tokuko’sroomtofeeluplifted

Tweet

Pocket

When I was exactly 6 months old, I spent a day out under blazing sun, and that triggered my life with severe Atopic Dermatitis.  My whole body became bright red perceptively on the day.  

Because every patch of my skin was oozing, my parents put medicine on my skin, bandaged me up every day, and I ended up looking like a Mummy.  Even though I was a baby, no one ever said to me ‘What a cute baby!’

…Too baaaad, I couldn’t show them my natural cute-ness!…LOL!

My mother felt very sorry for my situation, and listened to the doctor when he told her to change her diet while breastfeeding, and even afterwards.
She took this task very seriously, and completely changed our family’s diet.

Back then, ‘Mochi’ (glutinous rice cake) was one of my favorite foods to eat.  However, because the doctor told her ‘Don’t eat Mochi either!’, no one could have Mochi for new years in my family, even though it is a must-have food for new years in Japan.

Nowadays we live in a culture with an abundance of foods, but maybe by the early 1900s, Mochi was a delicacy, and we all worked hard until the end of the year so that we could have some like rewards for ourselves.  I was told that when they would be eating Mochi I would say, ‘Please give me just one bite, please!’. 

After that, my parents would only eat Mochi at night time after I fell asleep.  It must have been thrilling for my parents to sneak out of my bedroom craving for Mochi…LOL!…I bet they enjoyed this Mochi very much!….lol

As you can tell, we strictly and thoroughly committed to diet therapy, but we did not see any improvement whatsoever.  My condition did not improve, and all of my family members ended up losing weight….LOL!!

For many decades, I have had this condition, and some of my friends even call me ‘The Pioneer Patient of Atopic Dermatitis’ jokingly….however, even though I have such a long experience of AD, have never experienced diet having an effect on my condition like,

‘Because I ate this, my condition has worsened’
‘I am flaring today because I ate too much sweets yesterday’

Medically, there may be a correlation with diet and skin, but many AD patients including myself do not see a direct correlation.
When I was hospitalized at Hannan Chuo Hospital in Osaka, Japan, many of my patient friends said the same thing.  This is just my opinion but a balanced diet is the most important for healthy skin but not unbalanced one.  (i.e.  Like too much chocolate and too much something…are not good for anyone!)

My mother, who after thoroughly committed to diet change also told me,
‘Eat anything you want, restricting your diet did nothing for you.’
However, I want to remind you that the dietary advice was from long time ago, and as contemporary medicine has advanced, many things may have changed as well.  I am just sharing what was true for myself.

Going back to my story…

As my mummy condition did not improve at all, my dermatologist prescribed me an expensive Medicinal Cream from the U.S.A., and told my parents to ‘Rub into the skin thoroughly.’  At that time, only the doctor would apply this special cream onto my skin, and I remember feeling like a V.I.P….hehe.

As you probably suspect already, the cream that they were applying on me was a ‘TOPICAL STEROID‘(TS).

Back in the days, I had an impression that no one knew of Atopic Dermatitis or Topical Steroids and was feeling there weren’t so many patients with it.  Many times they called it ‘Eczema’, and even if children had it, many outgrew it overtime.

However, this Mummy baby with some blood showing through the bandages showed no signs of improvement.

My parents felt so badly for me, and took me to the hospital every single day to have my bandages changed.  They truly cared and did everything they could for me.

After applying the new special cream, Topical Steroids, I began to have some good days, and when they did not apply bandages on me, they said I looked confused.  The bandages must have felt like they were uniforms for me!…LOL!

(After this, because TS complicated my dermatitis, even if I would apply TS, the symptoms would subside for a little bit and come back with a vengenance.  I became heavily addicted to TS, and would not be able to function without using them every single day.  Eventually, they started not to work at all.  Finally, four years ago, I completely quit TS, and my body has recovered enough to have ‘Normal’ skin without TS.  I cannot be happier!)  Note: as of 30 Apr 17

What am I trying to say with all of this…?

I was a bandaged baby that looked like a Mummy.
No one told me that I was cute.

However…

I do not remember any of this.

I have only heard about the above statements from my parents.

All that I remember is that the doctor was the one that would apply the ‘Special Medicine’ at the hospital, irradiated purple light on me, how they would be mixing the medicine with what looked like a cake spatula, the smell of medicine…etc….

Excluding my eyes, nose, and mouth, I was covered with bandages, but I could breathe, I could eat, and I was loved by my parents.  Because of this, I do not remember writhing in discomfort and pain.

I can only imagine that from the intense itch, lack of sleep, and overwhelming discomfort, the Mummy Baby must have cried a lot.
My parents were probably more distressed than I was, wanting to help me in any way possible.  It was impossible to imagine the heartache of theirs by the Mummy Baby.

However, after I would cry out my eyes from the itch and pain, my kind parents probably held me, and hugged me tightly.

For the parents who feel horrible for their children who are going through TSW (Topical Steroid Withdrawl)…..

For the parents who used TS on their children, and now their skin is flared and your heart is hurting…..

It’s ALL going to be ALRIGHT!

You just need patience for a while….

Even if your child is currently suffering immensely, and even if you feel completely helpless to see him/her, in the future, most of them forget about the pain.

They will heal !

Even in the history of human kind, I am one of the longest users of Topical Steroids but such a person like me is increasingly seeing the impact of natural healing power of human beings.

After stopping TS and moisturizers, my skin is becoming stronger obviously.

Baby Atopic Dermatitis heals naturally with time.

When we apply TS, the inflammation goes down quickly, but this is just suppression, and after that, the problem becomes even more complicated and intractable.

I am the perfect example for this, meaning, am the testimony of the effects of TS on the human body.

Maybe for some reasons, God or some force wanted you to become stronger, and he may be temporarily giving you this challenge.  By overcoming this, you will not only become stronger, but you will also become kinder.  You must grow from this experience, and use it for your advantage in the future.
Please don’t waste ‘this opportunity‘ = ‘painful experience‘, like regretting or lamenting, and make use of it.  That’s all you have to do.

There is no reason for you to regret using TS on your child.  You made a decision to quit it, so that’s good enough. 

You believed that it was the best thing to do in that moment, you did it out of love, and not because you wanted to hurt your child.

Because it was an act from love, you have no reason to regret your actions.

If it would help your child if you cry and regret, go ahead…..but you know that this does not help them.

Time passes equally for all of us, and we are the ones that decide which emotion to feel.  Please do not spend your precious time regretting something.  The time you spend regretting is a valuable minute of your precious life.

While you fight this condition, to make this time a valuable one, please just look into your child’s eyes with a BIG smile. 

Afterwards, you will be able to say, ‘That was one heck of a ride, but it was a good experience for all of us!’ 

If you can spend this time loving your child, it is more than enough.  You are already wonderful parents!

The used-to be mummy baby does not have a grudge against her parents.
My parents thought in the best interest for me, and bought an expensive medicine (at that time) for me.
I do not remember any suffering that I went through.
I can only remember the things that I am thankful for my parents.

It must have been very hard for my parents to raise me while I had such horrible symptoms.
Even then, my parents raised me wishing that I would of course outlive them.
Even if I looked very odd (…LOL!) they must have felt happy that my condition was not a life threatening illness.

In the future, your child will, for sure, thank you too.

Please look into their eyes with a warm smile while you care for them.

Please realize that just your child is being there with you is something to be very thankful for.

Please be grateful for your son/daughter’s life.

When your child goes to sleep, whisper to them…

‘You were born to make me stronger, weren’t you?  Thank you.  Mom (and Dad) is going to protect you with everything I have.  Thank you so much for being born.’

You are heading into the bright future…1 second, 1 minute, you are getting closer.

You will get there…Please know everything takes time.  Accept this time for healing.

When we look back, raising a child goes by so fast.  Please enjoy this precious time.

Please feel thankful that your child is close with you, and take pleasure in his/her being alive.  You have reasons to feel rejoiced.

Cheers for another day for being with your child!

Have a GREAT day!

Translated by Hikari M.
Edited by Tokuko Abfab

　　　👇　See this post below also! 　👇　

You can see improved kids’ symptoms w/o TS.

You can manage Atopic Dermatits without Topical Corticosteroids!

　　👇　オリジナルの日本語ポストはこちら　👇

                                The original post in Japanese

ミイラ赤ちゃんだった私から、アトピっ子のお母さんたちへのメッセージ

#Tokuko’s Room to Feel Upliftted       #tokuko’sroomtofeeluplifted

Tweet

Pocket

***The subject sounds like as if this topic is only for people with sickness but this might make well-conditioned people’s life also a little easier. (^_^)b ***

I have been sharing some of my personal thoughts and inspirations that might be able to help other people on this blog, as well as introducing ‘No Moisturizing Treatment (NMT)’ for Topical Steroid Withdrawal (TSW) patients (Atopic Dermatitis/eczema patients who were on Topical Steroids, stopping steroids completely and experiencing horrible side effects) and trying to encourage them as an experiencer of VERY severe one.

For many sufferers going through severe withdrawal symptoms and their families, finding a doctor or hospital that understands TSW is very difficult. 

Many people are suffering from this condition, and every single day, I receive many questions and consultation requests from all over Japan, and all over the world.

Also, using SNS, many people contact me directly about their conditions.  The numbers of questions and consults are astounding though I’m not a dermatologist…..lol 

Tokuko is trying to answer questions from all over the world…day in, day out….without sleeping……  ZZZZzzz…. (?_?)……lol

Since I have experienced severe symptoms, I can really understand what all of you are going through.  It really is a hell-ish journey, and so many have no clue about what to do, so I try to answer all the questions to my best ability.

However, since I do this all on my own, there is a limit to how much I can do.  Although I read each and every comment and your questions, hope you can understand if I cannot write back to every single one of you. 

For this reason, if I receive many similar questions, I will write the answer as a blog post here.

Also, many of you read the comments section as well, and if there were some questions and answers that were very useful in it, I will edit it and make it a post as well.

                    *********************************************

Today’s question is from a very kind-hearted mother, who has a daughter with severe Topical Steroid Withdrawal symptoms.  We have already exchanged emails sometimes in the past in the comment column.

The daughter started NMT (No Moisturizing Treatment), and has been sleeping better, but now her oozing has increased.  With the ongoing symptoms, she is feeling afraid, and asks how long will it take for her daughter’s symptoms to subside.

I totally understand that you also want to know how long it will take to heal and how long did it take in Tokuko’s case because I receive similar questions every single day.  I can feel her genuine concern for her daughter’s well being as well.

My answer to her is…

                    **********************************************

Dear OOO

When there is an issue with lots of oozing, we learned that we must limit our liquid intake at the Hannan Chuo Hospital (in Osaka, Japan).  Even for non-oozing patients, liquid restriction is done there, and after being released from the hospital, we still continue to restrict liquids to stay course on the treatment.

When I was hospitalized, my legs were double their size with edema so my water restriction was very strict (I felt like I was in the desert, dying of thirst…lol), and I ended up losing 12kg just in water weight the first week!  Then the non stop oozing that I had finally stopped! 

***Please understand that it is in my ultra severe case.  Needed to exhaust excess water in urgent due to severe hypoalbuminemia.***

I am not in a position to offer a medical advice but please take ‘water restriction’ into account.  (***Please note that I did this under a doctor’s surveillance.)

Also, many people ask me,
‘When will I heal?’
‘How much longer will it take?’
‘With this symptom, how long will it take to heal?’
They send me their photos of affected parts, and ask me what their future holds.

Personally, since everyone’s symptoms, severeness, location of symptoms, TS usage time and strength, body type, withdrawl start time, etc. all differs individually, I feel that there is no point in trying to predict the future or compare with each other.  (We must also remember that it is very hard to gather data for dermatitis conditions.  This in itself tells you that there may be no point in trying to figure it out.)

It sounds to me that your daughter’s condition is still benign compared to the symptoms I had.

When I was recuperating at home,

I was covered with dermatitis from my head to toes.  There were no normal parts.

My legs became double their size many times, I could not walk from the severe pain,

looked like a burn victim with no skin,

lost 80% of my hair twice,

looked like a completely different person with swollen face,

and if I were to take off my jacket, my dry skin would shed and I would have a handful of dead skin flakes…

I continued this kind of flare cycle many times.  I guess there’s no need to compare with me.

(And even then I could not find a hospital that would accept hospitalization.)

Even with this kind of severe symptoms, after being hospitalized and implementing the NMT, my symptoms cleared after 3 months in my case.  I just learned how to accomplish the treatment and am just disseminating this great info to other sufferers with TSW.  You can search the whole world, but you will not find a magic cure for this condition.

During my hospital stay, I learned how to improve my Natural Self Healing Abilities.

I used Dr.Kenji Sato’s method (NMT) there and was encouraged by my hospital mates who left the hospital in a very good condition.  Also, I read Dr.Sato’s book (in Japanese only…), listened to what he told me to do, and believed with my whole heart that this treatment would work.  

Each day I just did what I could do best, in that moment.

***When I was hospitalized, I was unable to walk, and was even prohibited to try.  Even when I was finally able to walk, the pain was SO bad that I could barely walk 32 feet (10 m) away, panting with strong pain that still remained then.  Going to the bathroom was a huge deal, and I would have to give my all to go.  Exercising did not start until the very end of my hospitalization (though we had to do).  Even then, my rebound flare symptoms subsided within 3 months.***

Again, I am no doctor, and cannot give medical advice, but I can share what I have experienced.

I mean, this is all that I can do for fellow sufferers as a non-medical profession.

This may sound harsh to you, but if you are constantly searching for others to comfort you, you will not be able to cultivate your strength that is within you.  Without growing your strength, you will be unable to fight the next challenge when it comes.

Rather than waiting for someone to tell you ‘Don’t worry, everything will be okay!’, ‘You will heal soon!’, you can find something to be thankful in your life, RIGHT NOW and RIGHT HERE, and by doing so, your heart will begin to relax little by little, and day by day.  Unless we do this, when another problem, a symptom, will come up again, you will start to worry with no end in sight.

I talk a lot about ‘Promoting your cheery mood by yourself to find your own joy.’ on this blog, and it is about finding something that you are truly grateful for where you are.  When you find something to be grateful for, your are improving your mood by yourself. 

If you become dependent on others to make you happy, you may feel relieved right after you talk to someone who encourages you, but when another problem arises, what will you do?  Most likely, you will again need to talk to someone, and the cycle goes on and on…

The kind hearted people who listen to your story probably truly want to help you.  However, you must remember that they are expending their own energy to listen and accept whatever you must share, and will have to recover after listening to your stories.

We must be able to make ourselves happy.  Once you are able to do this, life becomes so much easier and that is why I am sharing this with you.  When we overcome our challenges is when we start to cultivate our strength.  (However, make sure you are not trying to make grouchy people happy either, this will create a lot of stress.  Make yourself happy ‘by yourself’.)

In this blog I wish to share these kind of tips on ‘cultivating your own happiness’ too, as all of us will face challenges and adversity.

After trying many treatments available for Topical Steroid Withdrawal, what I can say is that following Dr. Kenji Sato’s advice that I lerned in the hospital, and committing to the treatment gave me the quickest results.  Again, as a non medical profession, that is all I can say.

If you choose this treatment, though it is up to you which treatment you will take, and if you have a doctor who you trust and who reassures you that you are in ‘good physical health’ while on the treatment…just keep on keeping on. 

Try not to worry about this symptom, or that new symptom, but even in tribulation, try to find something in your life that you are blessed in…and hold on as the time passes.

Everything takes time.  When you ride a train, you must pass many stations to get to your destination.  If you get off each train station and wonder, ‘I’m still not where I want to go!’, it will be kind of a waste of time and energy to worry about a thing.
If you asked, ‘How come it is not my destination here?’ to someone else in the middle of your way, he/she will be hard-pressed to know how to respond….lol

If you have decided which direction you want to go, and you have been taught HOW to get there..COMMIT, and then just keep on going!

It will take time, and there is nothing you can do about that.

I have already explained about approximate healing time in the hospital as a sample.  Remember.  It is the destination where you are heading for.

It seems that you truly care for your daughter.  So the fact that you have a good doctor by your side is a wonderful environment for you and your daughter and you can keep being a person who your daughter can express her feeling under adversity.  Don’t you think it is really great already?  So please try to see such very very GOOD things in your life and be happy!

The goal is not the perfect healing.  The real goal is that you are not controlled by the sickness.

The best way to heal yourself is finding things to be grateful for.  Rather than finding every symptom to worry about, try to find things you are thankful about.  Even if you are filled with anxiousness, unfortunately, there is nothing you can do for your daughter’s current symptoms ‘right away’. so all you can do is shift your perspective.

Again, this is an advice from a non medical profession, and I am not sure how much of a help it is for you.  However, since your daughter is in a situation where you cannot control, I wish that your heart would be lightened even just a little bit.  I’ll be happy if I can be of any help. 

Please take care.

Tokuko Abfab

                    ********************************************

To everyone,

Our heart is always up to ourselves.
Only you can control your heart and outlook on life.
Once you truly realize this, I am sure you will have a very bright future.
As much as possible, please overcome this challenge with a light heart.

I am rooting for all of you!

Have a GREAT day!

Translated by Hikari M.

Edited by Tokuko Abfab

　　　オリジナルの記事はこちら　

いったい、いつ、治るのでしょう？

#Tokuko’s Room to Feel Upliftted       #tokuko’sroomtofeeluplifted