Tuesday, December 3, 2013

Why Does ITSAN Continue To Promote Moistuirizing?

Why does ITSAN continue to advise it's new unsuspecting members who depend on them for help and guidance to moisturize? The organization continues to give this advice even after being repeatedly made aware of an abundance of overwhelming evidence that moisturizing during topical steroid withdrawal slows and prolongs healing, creates an environment making one more susceptible to infections, and in general makes tsw an almost overwhelming and intensely uncomfortable experience?

What is it going to take for ITSAN to stop encouraging people to moisturize and to start giving good advice on this and other healing methods for tsa/tsw? Perhaps ITSAN should just stick to raising awareness of tsa and forget about trying to be a "support" group. They are failing miserably at the support part of the equation. They are not supporting anyone in any truly meaningful way that I am aware of, and they are actually causing much added and unnecessary suffering with the way they allow their forum to be run by a small handful of poorly equipped people who think they know what's best for everyone else. People who by the way, don't know the first thing about healing, or have a clue on how to heal from the topical steroid addiction. Their answers to the wicked effects moisturizing has on one's hypersensitive skin are often very vague like "tsw is a mysterious thing", and "tsw is full of twists and turns". Never do they consider it just might be the moisturizing or food triggers or stress. or a combination of all of the above. No, they say tsw is "mysterious". Well folks, it's not really mysterious at all.

Many of you must wonder why I won't leave this topic alone. If you have read my blog, you should know that months ago I discovered a lot people were posting in their blogs on how they felt utterly helpless in dealing with tsw. I could see pictures of people's glaringly "shiny" moisturized skin with the unhealed skin splits after more than a year in tsw in many cases. There were basically two common themes running across almost all tsw blogs I read. I could see a very direct cause and effect relationship between what ITSAN teaches on their so called "support" forum and what people who join ITSAN believe. They believe what ITSAN says. It's only natural. ITSAN has a lot of credibility in the area of tsa/tsw in the eyes of the unwary person new to tsa/tsw, as well as the under educated and misinformed.

The other common thread I saw among these people's blogs was they all were members of ITSAN. They all express their deep gratitude to ITSAN. For what I don't know. Personally for me, being a member of ITSAN only delayed my learning and caused me to take the wrong path to healing my own tsw symptoms. I think ITSAN is all people have. It's the obvious place to turn to. What's not obvious though is the way they run their forum, and the way the "vets" there are dead wrong on how to deal with tsw. Most people starting tsw don't have the support of their own doctors, and often even their own family members. So they naturally want to believe in ITSAN and support the organization.

ITSAN's "support" forum has been up to now the only place for people to turn. Apparently Dr Rap is starting his own support forum which will be more of a doctor to patient forum. What is really needed is a true support forum. An alternative to ITSAN and Dr Rap's upcoming forum.

It's only natural when  we find and join ITSAN that we all feel a certain "comradery" with other ITSAN members. But ITSAN is allowed to be run in a way that is counter productive to healing. However, being a private forum, they have every right to do whatever they please.

It's becoming painfully obvious that ITSAN isn't going to change. So, it's past time for an alternative forum. One that does not cater to doctors or any facet of the medical community, one that does not give poor advice to suffering people. A forum where people can make important decisions for themselves armed with all available information, not only information forum owners want them to see. A forum where everyone is treated with respect and courtesy. A forum where people won't fear speaking their minds. A forum where a small handful of "vet's' won't be allowed to do what they are allowed to do on the ITSAN forum. A forum where free speech is encouraged.

I will pound my fists and scream at the top of my lungs until the whole world is aware of how ITSAN runs their forum and treats their members. Don't let their seemingly kind and caring ways fool you. They are not what they seem. I do not support ITSAN and have made it very clear why I no longer do support them. I don't want to be a part of what they do. Simple as that. I've expressed why many times.

Moisturizing is probably the most important decision one can make in dealing with their tsw. It can mean the difference between being extremely miserable for the duration of their steroid withdrawal, no matter how long it may be, or it can mean being just slightly miserable for the duration. This is a big difference.

Yes, ITSAN vets, you made it through, or are still trying to make it through tsw via moisturizing, and you know lots of people who made it successfully (quite hellish experiences I might add due to using moisturizers), and Dr. Rap has successfully cured over 2,000 people of tsa by having them moisturize during their recoveries. Did you ever stop to think for just one moment that maybe none of these people did tsw via not moisturizing? Therefore, how could they or you, possibly know what effects not moisturizing would have had on not only the speed of healing, but mainly on the comfort level while healing?
 
It's no longer a question if one should moisturize or not during topical steroid withdrawal. I did it in real time while I was on the forum for everyone to witness. After that, the info came out from the Japanese conference on how MW is "essential". Since then, many others have decided to try it and every single person that has done it has reported positive results. Others have done MW before I did and have come out and told their positive experiences. No one is reporting negative experiences with MW and everybody is reporting positive experiences. As in A MUCH MORE COMFORTABLE HEALING JOURNEY! The comfort level one experiences that does tsw without moisturizing is significantly improved. The science is behind it as well. Moisturizer effects on the skin are well known and documented. You just have to dig a little deeper than big pharma's (and Dr. Rap's) websites to find it. Try and not forget how we all got addicted to topical steroids.  

Below is a copy and paste of ITSAN's Q&A on moisturizers that I found on their site under the "Resources" tab.

Q: What are the most common moisturizers used during topical steroid withdrawal?

A: During topical withdrawal, you may experience very tight dry skin and extremely flaky skin. Although no moisturizer will cure or speed up topical withdrawal, using a moisturizer can help soften skin so movement is easier. Which moisturizer works best is highly personal.

A simple moisturizer with few ingredients tends to work best as the skin is very sensitive during topical steroid withdrawal and may react to certain ingredients. Experts recommend Vaseline. Some people prefer natural oils. Olive, white palm, coconut, jojoba, and other pure natural oils have been recommended in the online support group.

Be sure to read the label of any moisturizer you buy, even if the label says it’s intended for eczema. Many contain irritants and fragrances. It’s also important to read labels because a lotion formulated for eczema treatment may contain hydrocortisone, an over-the-counter form of topical steroids.


On ITSAN"s Itch Q&A "WHAT CAN BE DONE ABOUT THE INSANE ITCHING?" Number 10. Put on coconut oil, olive oil, or your favorite gentle moisturizer.

ITSAN speaks very highly of Dr, Fukaya, but they seem to be ignoring just about everything he has taught on the subject of moisturizing. Why? C'mon ITSAN! You can't have it both ways!

6 comments:

  1. If you go through the early days of my blog, you will see I tried A LOT of stuff on my skin! I don't regret it though as it brought me to where I am today and personally I believe there is a reason for everything. However I am thankful for Dr. Fukaya and his research on MW. Funny thing though is I learned about it through ITSAN. I appreciate your stance with ITSAN and the whole situation from your viewpoint is unfair. I was on/off the forums the last few months so I was not there to witness any exchanges you had with anyone there. I feel bad though that there couldn't have been a better outcome to the whole situation. Your information on MW is very helpful and and important so please keep blogging! Even when you are 100%, it would be nice to know how you are doing!

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  2. Tracy, thank you for the kind words. Looks like we both found out that moisturizing with anything wasn't the best way to go. I did read the early days of your blog. Just read it again. If the vets on itsan were talking about the virtues of not moisturizing during tsw, I don't think you would have moisturized during those early months. I too found Dr. Fukaya's information on MW, but not from people on itsan talking about his views on moisturizing. I found it on the web after I figured out that moisturizers were making things worse. The info simply wasn't available on itsan so I had to search the web until I found what I was looking for.

    I am forever in his debt for his published research on the subject of MW. It confirmed I had done the right thing, and gave me the confidence to stick with it when I had screwed up and used moisturizers again and had to do MW all over. I was totally in the dark when I did it the first time. As in unknown territory. I'm also indebted to him for his email exchanges with me, and for all of the research he has published on his blog.

    However, with that said, my own personal bone of contention with itsan has been buried in the past. I just hope going forward they realize that not moisturizing is the most comfortable way to go for most tsw sufferers. This is really all I ever wanted. That, and for them to stop saying the only healer is the passage of time. Both are critical to healing. Not moisturizing is the best route, and it is unknown how long it takes to heal. Those are the facts.

    Itsan doesn't want people to tell it what it should and shouldn't do, I understand that. However, as a non profit organization holding it's hand out for donations, it has an obligation to follow it's own mission statement. In a nutshell, itsan staff tell tsw sufferers to not waste their money on diets or anything else, and to moisturize with whatever makes you feel comfortable. The justification is the only healer is the passage of time. How self defeating is that? Is that good advice on moisturizing? Me thinks not.

    I don't know about the rest of you but I would have much preferred to have read posts on how beneficial not moisturizing can be, and how I would be more comfortable during my tsw journey via that method. Instead all I read was what to moisturize with, as though it was a necessary thing to do. Hearing half the members saying moisturizing is better, and the other half saying it is not, would have been an immense improvement over the information I found on itsan in my early days there. Which was 100% pro-moisturizing. I assume it still is going on by what I see. In spite of their professed respect for Dr. Fukaya. Oh well.

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  3. Hello, I just stumbled across this post. I'm very new to going through this process and will look through your site more, but I have some questions on this post... You referred to MW... what does that mean? What all recommendations do you give differently than ITSAN and why? We are only two weeks off steroid cream for my four year old and the eczema behind his knees is the worst it's ever been, today even his fingers were bloody from scratching (the blood came from behind his knees... We are trying to figure out our way through this and do what's best for him. This is our third night to bandage him up. I put a natural, home-made balm on (mango butter + coconut oil + sunflower oil + vitamin E + essential oils beneficial for eczema) then non-stick bandage, taped in place, then a gauze wrap, also taped. I don’t know if I should leave him bandaged 24/7 or when/how long to let his skin breathe… I don’t know how often to change the bandages… after today I wonder if he would be best off to stay bandaged until it heals up some just to protect his legs from the scratching. (He knows to try to be as soft as a feather tickling, not to scratch or dig… but he says it itches so bad it hurts..) I’m at a loss as to what to do for him, as we are still in the process of figuring out our game plan. Since it sounds like you’re saying that it’s better to not moisturize then I wonder about at least put something on (Neosporin??? maybe just spray on a little essential oil mixture???) just to help the open skin heal. I did read your other post “Should I Use Moisturizers During TSW? and I’m wondering if the study showing the susceptibility to irritants is really only applicable to store-bought moisturizers, or if it could apply to natural, home-made balms like my own. Anyway I’ll read more of your posts tomorrow but wanted to get your thoughts on those things. Thanks!! :D

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    Replies
    1. Hi there! I can't give medical advice as I am not a "licensed medical professional" and it is unlawful for me to do so. However, I can provide you with information and you can make your own decisions. Best you read my blog, and especially Dr. Fukaya's blog. MW is short for moisturizer withdrawal. It's just a term to define the process of transitioning from using moisturizers to not using them. It usually takes 10-15 days for the process to complete. The process is allowing the skin to function as nature intended. When we stop using moisturizers while in tsw, our skin drys and begins to scab over. That is a natural healing process. Problem is, the MW period can be especially painful. The good thing is, people who do it are able to spend the rest of the tsw recovery in relative comfort. The moisturizers cause immense suffering and itching while in tsw. There is already pain and itching as it is, and using moisturizers just makes it worse.That includes all natural of moisturizers as well as ones full of chemicals known to damage the skin barrier. I know that probably sounds very counter intuitive to you after seeing Itsan, and spending your life being told to moisturize your skin by doctors, parents, media, etc. If you research how the skin functions this will all make sense to you.

      Putting crap on your skin only harms your skin barrier, not heals it. The best thing I (and hundreds of others, likely thousands) have found for relief is dead sea salt baths, air, and sunshine. Nothing else on the skin.

      See links on the right side of my blog to studies on olive oil on the skin to get an idea of what a completely natural oil does to the skin. Again, your best info is researching how the skin functions and you will see what the do. I learned early on to not use anything on my skin. That includes everything. Other than a 20 minute proper dss soak.

      I had childhood eczema from age one to about my late teens. Both arms and legs were covered in eczema the entire time. It did not bother me as I knew nothing else. It went away when I was a teenager just like a doctor told me it would when I was about 10 years of age. Eczema is not common in adulthood at all. Rashes in adulthood usually come from harsh chemicals in the things we use. If we are unlucky enough, a doctor prescribes topical steroids to us and then we have a lifetime of steroid induced rashes that most doctors confuse as regular eczema. Atopic dermatitis and a million other made up names.

      May I ask why your son was using steroids? I would bet my bottom dollar he got a rash from something like baby oil, soap, or a million other things that can cause the skin distress. And then he was prescribed topical steroids (ts) to treat that rash right? I hope to God he wasn't prescribed ts for eczema at such a young age!

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    2. Hi! Thanks for your reply. Wouldn't a salt bath be painful when the eczema is raw, open wounds? I know you don't want salt in a wound so I just can't imagine putting my son in a salt bath right now. Have you done salt baths when your eczema was raw and bloody?

      As much as I'd love to let it air out, for the time being it’s too raw and open and he makes it worse itching. The barrier (bandage) seems to be helping the skin underneath it to settle down a bit and not be so constantly agitated. I guess we’ll just have to keep taking it one day at a time and hopefully he’ll be able to let it air out some soon without clawing into it.

      He wasn't on prescription cream (yet, thankfully), just on hydrocortisone. As for why, his allergist said that the eczema was a response to allergens. He tested positive to tons of allergies. We've done the environmental controls in our house and that's helped a great deal with his allergies, he no longer gets the eczema on his cheeks (where I never used hydrocortisone)... mainly his legs (where I did use it). Since his cheeks got better but legs got worse I wondered if the hydrocortisone cream was connected so I looked in to it and found that he may be addicted to it. It's crazy to me that he could be addicted to something over-the-counter.

      Anyway I'll keep reading about using moisturizer or not. Thank you!

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    3. An iodine salt bath probably would be very painful, but not a dead sea salt bath with all natural dead sea salts from the Dead Sea. A little stinging but not very painful. Caution though, they are very drying to the skin, and I would avoid doing them unless my skin is badly broken open. Dss baths are a good tool for closing larger open wounds that arise from tsw when done properly. It sounds like he is going through tsw but only you would be able to know. Regardless, keeping the skin dry is better than keeping it moist, no matter what causes the rash (imo & others).

      All I can really tell you is get a good understanding of how the skin functions, and of what putting moisturizers on it do, and you will know what to do. Which is pretty much nothing if it's just childhood eczema, or a temporary rash caused by allergens. One needs to treat the cause (avoiding whatever causes one to break out), and as far as treating the symptoms, one needs to be careful to not exasperate them. If you don't mind, please post any future comments on a newer post than this one. I really hate seeing Itsan's name every time I go to respond. My most recent 25 month picture update post would be best since it's more current. How long did he use ts? Approximately how much used per day? Or, how many tubes do you recall using on him up to now? Luckily it was not a more potent form so his recovery from the damage it did should not be too difficult. How much and for how long is key to how long it will take for his body to recover. It's fortunate you caught this early. Most people don't until they have used very strong ts for years to the point the ts stop working and then they begin to search for answers. I've seen plenty of young people in their early 20's having a hell of a time due to using ts their entire life. It's not the parents fault as they were only relying on what doctors told them. It amazes me this poison is not banned. But, I know of many products that are not banned in this country but are in other countries like Canada and most in Europe.

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