Sunday, February 16, 2014

Moisturizer Withdrawal And Itsan's Private Forum

Many people are now discovering that not moisturizing is a much better way to get through topical steroid withdrawal as opposed to moisturizing. They are discovering that not moisturizing brings much more comfort, allows the skin barrier to recover at a much faster rate, allows the skin to strengthen faster, reduces itching, and in general allows one to lead a normal life while recovering from topical steroid poisoning or addiction. Moisturizing during tsw actually weakens the skin barrier, prolongs healing, intensifies itching, and makes for a very long and very uncomfortable recovery. There is no question about this, and as each day passes this truth is becoming more and more apparent to people everywhere, despite Itsan's long time unhealed moisturizing vets attempts at discrediting this very real fact.

To be fair, I believe Itsan has been instrumental in bringing thousands of people suffering tsw together in one place, which has been very beneficial in many ways. Itsan has also been instrumental in providing information to people so they understand what is going on with their skin. They definitely have done a lot for awareness of tsa/tsw and we all appreciate that. But when it comes to providing good resources and information on dealing with the long term recovery process, Itsan fails miserably. Over the last couple of years they have either intimidated people with valuable contributions that don't conform to their own beliefs into leaving the forum, marginalized people until they left out of disgust, or outright banned them. The latter being a rather cruel thing to do to people in the throes of tsw, effectively cutting them off from the rest of the group and access to others experiences.

All in the name of keeping a calm and caring atmosphere on the forum so suffering people don't get upset or stressed out from arguments or hot debates. Very noble but it definitely has been a wrong approach and not very conducive to information gathering and sharing, debate, and proactive work in finding more effective ways in healing from tsa. Itsan should have embraced these people and their ideas instead of driving them away. They should have realized a long time ago that their whole support forum approach was wrong. It's one thing for Itsan vets to push their views on things they have experienced. But it's a whole different ballgame when they push their views on things they haven't experienced. Like not moisturizing throughout tsw.

But, let's put things into context. Itsan's forum is a privately owned and operated forum run by just a few people. Due to Itsan's effectiveness in bringing many hundreds, if not thousands of people together into one location on a support forum site, these few people are in a very unique situation of having a huge influence over, and impact on these suffering people, and have a great responsibility to them. Newly suffering people to tsw are looking for information. So they rely on the forum and it's vets for the answers they are seeking in the belief that these people know what they are doing. After all, the website and forum have an appearance of people who genuinely care and understand what we are experiencing. Itsan is a non profit organization which holds itself out as an organization with a mission to help educate people about tsa/tsw and to support people recovering from tsa by providing the information and resources they need.

The vets experiences are invaluable to all new people to tsw who are trying to figure out what to do. But this should include all vets and not just "selected" or "chosen' vets whose beliefs fall in line with the owners of the forum. This is where Itsan fails it's responsibilities to the very people they are trying to help. Private forum or not, all opinions on how to best treat various symptoms of tsw should be heard and embraced, not marginalized or discredited. Debated and discussed.

It is extremely important to understand the implications of what a few people who sit on Itsan's board who make the decisions on what policies the organization carries out has. Their policies are based on the consensus of a very few people, and some of these policies cover what information they will and will not allow to be seen on their private site. This includes what the most effective and best methods are for recovering from tsw are. This kind of influence over so many people by so few people can be a very dangerous situation. Especially in a private forum setting that has garnered nearly all people suffering from tsw onto it's site. One only has to look at any similar "Groupthink" situations to understand this.

Itsan's board members has their own opinions and has every right to espouse those opinions. But the danger here is if a large number of people rely on the opinions of the consensus of just a few people in this kind of setting and that consensus turns out to be wrong, many people can be harmed. For example: For many years woman have been told they need a mammogram once a year. A new study, published in the British Medical Journal last week reports that “annual mammograms will not reduce the rate of breast cancer mortality.” The conclusion was based on research beginning in 1980 involving nearly 90,000 between the ages of 40 and 59 years old. The study's findings even show that yearly mammograms do more harm than good. This type of thing is all too common. It reminds me of how we were told for many years to replace butter with margarine for better health, only to learn many years later that consuming butter is healthier than margarine is. So goes ideas on the benefits of moisturizxng, whether it be during tsw or not.

But here is my biggest concern. Those examples are of consensus derived from very large numbers of people, doctors, scientists, universities, etc. If so many people could be so wrong for so long, just imagine the danger of a just a few people creating consensus on how to best mange tsw for the majority of people beginning tsw. To me it's mind boggling to know that a just a few people think they can decide what's best for everyone else on such a little known and understood subject. It is their moral and ethical obligation to take a neutral position and allow free flow of information, private site or not. To embrace all information and not be the ones who decide what's relevant and not relevant for people to see.

Its fine to express opinions as long as others can express their own opinions as well. But not allowing members to see others opinions that conflict with Itsan's own opinions is outright wrong, and potentially can harm many people. It is up to individuals to decide for themselves and they need all the information available to best do this. When you have a private forum that only allows the opinions of what the owners of that forum want expressed, then you have a bad situation for many reasons.

Yes, if we don't like it we can go somewhere else. And that is exactly what I would urge everyone to do if Itsan is unwilling to allow the free flow of information on their private site. It is a private forum and they can do whatever they want. But be aware that if you listen to their advice you are listening to outdated advice that has little value since much of it can not be debated on their forum, and most opposing opinions can not be expressed. Much has been learned since this tiny group of people have gone through their own tsw and people should be allowed to know what's been learned, and in a way that it is not discredited or marginalized by Itsan and their vets at the same time. But rather embraced and accepted as it should be. 

A little background on my experience with Itsan. I was a member of Itsan for a few months and managed to get myself banned from the site back in October of last year. Apparently, I had become a little too outspoken. I initially tried to convince Itsan to make subtle policy changes with very polite emails. There were a couple issues like Itsan staff and vets being able to say nothing can speed up tsw but others like myself could not say something can speed it up. I only asked that since there is no proof either way that Itsan change it's policy on the issue to saying something more positive like "to date we don't know if anything that can speed it up tsw or not". I don't think that was too much to ask. I am aware of the placbo effect as anyone who is runnig a support forum for sick and suffering people should also be fully aware of and I really felt that setting the belief in peoples minds that NOTHING could speed up tsw other than the passage of time was a true injustice inflicted on these people. I could see it in their blogs when they would parrot the same exact line. Their desperation in "knowing" nothing can help them and they have to wait for some undetermined amount of time to pass. It really made me sick.

However, my main bone of contention was what I had discovered about the effects of both moisturizing and not moisturizing has during tsw and the way my input on this subject was treated on the forum by forum staff and long time vets. And, the treatment continued for months after I was banned even off the site. The more people I was able to convince to try mw the more I saw Itsan vets post negative things about not moisturizing on their blogs. Everything from people trying it for one or two days and exclaiming how "it's not for everybody", to people trying it for a week and saying "it was too painful". None of those people asked me for help or advice and I feel many of them were out to discredit the idea of not moisturizing because they are so freaking brainwashed. Itsanity.

As time went on I finally grew so frustrated that I began to make demands that Itsan change. No more polite emails. Too many people were suffering needlessly and I knew it. I was quickly banned. I believe after banning me Itsan hand picked what threads and posts that I had done on their site they wanted their members to see, and kept those on the site, and deleted the threads and posts I made that they didn't want their members to see. A while back a friend of mine sent me screen shots of my "TSW On Hands" thread that I had started on Itsan back then  (I can't access the forum at all), and I was appalled at how in my absence how people were still asking me questions on the thread, but rather than Itsan telling people where I am, other members or staff would answer the questions in my place. Most of the answers people received were horribly wrong, incorrect, and counter productive. And most certainly NOT how I would answer.

I plan to do my next post on how to best deal with tsw symptoms on the hands for those of you who have it on their hands, but this post is meant to set the background and to help readers better understand why we are at the point where we are currently at now with the confusion that seems to permeate the community over the subjects of moisturizer withdrawal and not moisturizing.

I discovered early on that nearly everything Itsan believes and teaches about how to recover from topical steroid poisoning is not only flat out counter productive, but just the opposite of what people really need to believe and know. Although I supported this organization in the first two months of my tsw, both financially and by contributing by posting many times showing how to do moisturizer withdrawal at a time when practically noone had any information on it, or even was aware of the idea, I was called a "conspiracy theorist" for my views. I was insulted, discredited and marginalized to the point where most other members thought I was just some kook that didn't know what I was talking about. So, noone took me seriously at the time. Things have changed somewhat as the truth is very hard to suppress forever. However, Itsan hasn't changed in the way they operate, other than just very minor changes in an effort to try and retain some credibility, while they still continue to spread their misguided beliefs onto unsuspecting people who are suffering. This is simply unacceptable considering the circumstances.

Itsan claims they know of noone who has completed tsw via not moisturizing yet there is one person who has posted on my blog many times who competed her tsw in 9 months flat! Itsan is fully aware of this. This person was a member of Itsan but left the group out of disgust, for the same reasons many others have. She left on her own volition, whereas I left against my will. In the words of a former member I know, and I quote, "Itsan is dysfunctional at best". I can understand that statement as the organization holds itself out as a non profit support group for people going through tsw, who's interest or mission is to help people get through tsw in the most comfortable way possible. From Itsan's website: "ITSAN is devoted to providing resources to help eczema patients withdraw from their topical steroid medication to cure their addiction. Each passing day the organization works to fulfill the hope, of having a healthy and itch-free life, for thousands of eczema sufferers worldwide." Many people feel they do the opposite.

After banning me I was left to my own blog and the web to reach out to others on their blogs as my only resources to continue to get my message out. Luckily, Itsan has no ability to delete what information is posted on the web or on my blog. Itsan and their most loyal long time unhealed vets continued to do what they could to continue their attempt in discrediting what I had to say, even though I was and remain no longer a member. This has cased tremendous confusion amongst most people new to tsw, and it also has created a lot of problems in my effort to help people. Many Itsan members still view me as overly opinionated, egotistical, pushy, etc. The smarter ones see through this but the majority of people don't know any better and fall victim to this campaign of discrediting my experience and knowledge gained from it. This is very unfortunate for all involved and has led to things being said that probably should not have been said by myself. I just want my readers to understand that these problems have only came about because of Itsan's efforts to continuously discredit myself and my message. If I wasn't up against such heavy resistance in the last 7 months things would have gone down much much differently than they have.

Despite Itsan and it's still unhealed vets efforts to discredit MW, myself, and others who promote not moisturizing and supportive diets, MW has finally caught on because the truth eventually reveals itself. As has the idea of supporting the body's natural ability to heal through good diet, exercise, supplements, etc  

So, who is Itsan? According to their own website,  "ITSAN was officially co-founded by dermatologist Dr. Marvin Rapaport (UCLA Medical Center professor; leading expert on Red Skin Syndrome) and Kelly Palace, one of thousands of patients treated and cured by Dr. Rapaport." Kelly was a patient of Dr. Rap's and already had a website started around 2009 informing people about tsa/tsw. Apparently they got together and formed Itsan. Dr. Rap believes that it best to moisturize during tsw for comfort and his belief is based on the idea that people will recover eventually no matter what as long as they stay off the steroids. He is correct about that. Where he is incorrect though, in my opinion, is in his assumption that moisturizing is a good way to bring comfort during tsw while waiting for the body to readjust and completely heal. Which can take many years if one moisturizes throughout the recovery. In truth, moisturizing during tsw is the worst possible thing one can do and only brings much discomfort, prolongs the skin's ability to heal, and makes recovery a living hell. If you don't believe me just read people's blogs who moisturize, and then read people's blogs who do not moisture and see for yourself. Last year you wouldn't have been able to do this since nearly 100% of all people doing tsw were moisturizing thanks to Itsan carrying on what they learned from Dr. Rap and from the entire medical community. And thanks to their stubbornness on what people like myself were telling and showing them.

I believe Dr. Rap believes in moisturizing only because he is an accredited doctor, and this is what doctors are trained to do. He was able to break free of conventional wisdom on the use of ts, but apparently he hasn't put a lot of his focus on finding better methods of getting through tsw. To my knowledge, he hasn't been through tsw himself, or has he experimented with patients via not moisturizing. He has a very large selection of moisturizers that he sells on his website. I don't believe he is purposely making money off moisturizer sales knowing that moisturizing during tsw is the wrong thing to do. I believe his heart is good and he just isn't aware yet that doing tsw via no moisturizers is a much better way. Most wouldn't know this unless they have experienced it themselves. I may try and contact him in an effort to educate him on this fact, but fear I will encounter the same resistance I encountered with Itsan. It's been my experience that most doctors have a superiority complex and don't respect their patients, or listen to what they have to say. Naturally that's a generalization. I really don't know if it would be a wasted effort or not. Maybe someone else can do it eh?

Dr Rap also espouses the idea that people should avoid all sun exposure in the first several months of tsw. Wrong again imho. I exposed my raw hamburger hands to the intense summer sun several times per day from day one of my tsw every single day for the entire summer and fall and it only helped me heal. So, I'm not sure why he believes what he believes but I do know that the same belief has been carried on and exists throughout the tsw community and I believe the idea originated with him, transferred to Kelly, and then onto the forum. This is just Itsan advancing the same old ideas learned very early on. To this day I haven't read or heard anything as to why they believe this. What is the reasoning behind it? Is it logical? Doe it make sense? Even one of my Derms said it would be beneficial for me to get sun exposure on my hands in the first week of my tsw when he could clearly see they were raw meat. I would think one of the top Derms on the west coast would not tell me it's ok if it wasn't. Either way, I found out on my own that it was indeed ok. And quite beneficial I might add.

Apparently, Kelly taught Joey and others what she learned from Dr. Rap, and these people in turn taught many others what they learned and so on. So, you can see why Itsan and their vets believe what they believe. The main problem here is new information has come out since those early years and these vets don't seem to understand that what they thought was the best ways to recover from tsw is actually not the best ways. They actually learned the worst ways and they obviously don't have the capacity to understand this fact as has been shown by their repeated efforts to discredit anyone who advocates more effective ways, including the very Japanese doctors they claim they respect and support.

Oftentimes I hear the mantra "we are all different so we must find what works best for each of us". I find this concept far fetched and unbelievable. Yes, we all have subtle differences. But overall, all people are basically the same physiologically. We have different genetic tendencies and what not. Different states of health. All kinds of differences. But, again, these are subtle differences. Yes, some of us can react differently to different things. But when it comes to things that aren't so subtle, we all basically react the same ways. If we all sit in a tub of water 24 hours a day for 2 years I'm pretty sure we will all have the same outcome. I really don't know if that was a good analogy or not but I hope you get my point.

No comments:

Post a Comment