Tuesday, February 25, 2014

Is ITSAN Using Fear And Scare Tactics To Solicit Donations?

Apparently, a new mass email mailing was sent out today to members of ITSAN, and who knows who else this organization may have on their mailing list. I received one even though I remain banned from the site. I found it rather insulting. The subject line of the email reads "Where would you be without ITSAN"? You have got to be kidding right? At first I thought it was a sick joke. But apparently it's not a joke. I feel ITSAN is using both fear and scare tactics along with pictures of suffering children to get people to donate money to them, rather than depending on their own mission statement of spreading the word about tsa/tsw. And, I feel this tactic is highly disgusting to say the least. I also feel it smacks of preying on the fears of people who are already suffering. And, I feel ITSAN is holding itself out like they are the only source of information, when in truth, they have been giving very poor advice to suffering people doing tsw ever since their inception. And, they have repeatedly ignored valuable information contributed by others. They even have gone out of their way to discredit valuable information people have contributed, and hidden the information from the public and members of their own organization. So, not only are they NOT the only source of information, they are a source of poor information to boot. In light of the actual facts, I feel ITSAN is seriously crossing the line here in the way they ask for donations for their private organization.

Below is a copy of the text of the email. I'll let my readers decide for themselves. To me, the wording of this email and use of children's pictures is sickening. I'm sure many of you have the email so you can see the pictures yourself in there and make your own conclusions. Here is a copy of the text:

"Dear Friend,

Without the International Topical Steroid Awareness Network (ITSAN) you or a loved one might still be lost in the frustrating search for a cure for "uncontrollable eczema". There would be no shoulder to lean on during the painful process of Topical Steroid Withdrawal. There would be no one asking the medical community to recognize Steroid Induced Eczema and Red Skin Syndrome. ITSAN is the only organization of our kind.

There would be no trustworthy organization to go to for resources, no inspirational stories of healing and experiences of those that have conquered Topical Steroid Addiction. No information-packed ITSAN Newsletter.

There would be no global network of support communities. No one to provide you with accurate, reliable literature and videos for you to understand this condition and that help educate you and others.

And there would be no strong unified voice to speak to the media and lawmakers and get the message out about the dangers of topical steroids.

Like most of us you may have spent thousands of dollars searching for the answers to your skin's problem. If your skin is addicted to Topical Steroids, then ITSAN has given you a valuable solution. What is that worth to your peace of mind to find out the very medications prescribed to help, were/are causing this worsening condition?

Only your contributions keep us going. click Please make a tax deductible donation today. You may also give monthly recurring donations.

We're counting on you... just like you're counting on us. CLICK HERE NOW TO GIVE.

With much appreciation,


ITSAN, Volunteer Board of Directors
ITSAN is a 501 c 3 non-profit charity"


Without ITSAN we might be lost in our search for a cure? Really? Did I read that correctly? I knew I had to stop using topical steroids before stumbling across ITSAN's website, as I'm sure most people do. I knew instinctively I had to stop using steroids and did so before even searching for info on the web about the subject. After stopping ts use, I confirmed I was on the right track when I came across an article by Dr. Rapaport. Then a blog by someone going through tsw. So, ITSAN acting as though people can't find the "cure" without them is pure hogwash.

"There would be no one asking the medical community to recognize Steroid Induced Eczema and Red Skin Syndrome".

ITSAN may be the only "organization" out there spreading the word, but it's individuals who are actually having a much larger impact in spreading the word on tsa/tsw. The above statement made by ITSAN is false and misleading. Many individuals including myself have and continue to ask the medical community to recognize Steroid Induced Eczema and Red Skin Syndrome.

As for resources, finding ITSAN when I did only caused me more harm than good. I wasn't interested in a shoulder to lean on! I was looking for information, as I'm sure the majority of people who stumble upon ITSAN are. If I had not relied on ITSAN for my information in my first several weeks of my own tsw, I could potentially have saved myself two months of unnecessary extra suffering. I find no value in that kind of resource. When I tried multiple times to educate ITSAN on better information to help reduce the suffering of other people going through tsw, I was ridiculed, insulted, marginalized, and basically treated like a child who didn't know anything because I hadn't gone through years of tsw myself. And then eventually banned off the site. And yet they continue to hold themselves out as a "trustworthy organization to go to for resources, inspirational stories of healing and experiences of those that have conquered Topical Steroid Addiction"? It really bothers me to see this type of misleading language in an email soliciting donations. And to know others fall victim to the same thing I did.

"Where would you be if there was no ITSAN?" I can not even believe my eyes when reading that one. In my opinion you would be better off! I could care less if ITSAN asks the medical community to recognize SIE/RSS, and I thank God ITSAN is the only organization of it's kind. I also feel it will be a cold day in hell before the medical community will ever recognize tsa/rss, or anything else related to tsa/tsw, so I see those efforts by this organization as a total waste of resources for now. That is just my opinion of course. I feel there is far too much money involved for the medical community to give anything other than lip service to this subject for many years to come. The best resources available for this type of effort is us individual tsw's. We can blog. We can tell our doctors, friends, and relatives. That is what we've been doing and will continue to do. That is how the medical community will eventually recognize tsa/tsw for what it is and eventually change. It will take a long time due to the huge amount of $ involved in the industry. Not to mention tryng to convice the same people about the damaging effects of moisturizing. That should be quite the chore as well.

Folks, the steroid and moisturizer business is big business and isn't going to change in my lifetime, and probably not in yours.

And again, a "trustworthy organization to go to for resources". Really? Who can trust an organization that tells suffering people that nothing can heal them other than the passage of time, and to moisturize your skin if it makes you comfortable, when we know this is wrong? An organization that claims they know of no one who has healed by not moisturizing when we know there are people who have?   

"No one to provide you with accurate, reliable literature and videos for you to understand this condition and that help educate you and others". Uh huh. Right. Well ITSAN, you aren't the only source for information. I suggest you get that through your thick skulls.  

"Where would you be without ITSAN"? Well, ever since I figured out what I was learning at ITSAN was wrong (my first month there), and figured out how to treat myself on my own, I have been doing very well thank you :)

My purpose here isn't to bash ITSAN. It can be a very valuable organization if it were to choose to do so. But so far, I feel the organization has proven to do more harm than good for people suffering through tsw, and only breeds an atmosphere of despair, hopelessness, and negativity the way it is run. The way this email is written is just more evidence of just how out of touch this organization truly is. And, relying on fear/scare tactics and misleading statements in an attempt to get donations out of people just isn't right.

ITSAN, you are just one small organization and if it weren't for people such as myself you wouldn't even exist. So, get your facts straight and stop acting like you are "the" authority on the subject of tsa/tsw when you clearly are not. And please find a way to ask for donations that doesn't include using pictures of suffering children and doesn't come off sounding like you are so desperately needed when you are clearly more of a liability than you are an asset to the tsw community.

To you devoted ITSAN members: I'm sorry but the subject line of this email that ITSAN sent out just makes me ill. You can clearly see where I've been without ITSAN. And look at where JSAN ended up without ITSAN after being sidetracked like I was temporarily. ITSAN may be a great site for people to gather in one place, but it probably should be just for that purpose and for information sharing. You are doing the real effective work and ITSAN should rely on you, not your money.




9 comments:

  1. any advice on managing oozy areas? thx

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    1. Hi Ingrid,

      Good to hear from you again! As you know I use dss baths for most symptoms like this. But I also will commonly apply fragrance free witch hazel to my hands and put on thin white cotton gloves while the witch hazel is still slightly still moist on my hands so the gloves will stick to any oozing spots. This alone will dry them up in a matter of less than an hour. You usually have to repeat this a few times over a day or so but it works well. If you don't have cotton gloves, you might try cotton balls. I haven't tried those but it's the tiny cotton fibers in the gloves that actually help form the dry scab. As far as I know cotton is safe to use this way. I haven't really researched it. If that don't get it try water diluted tea tree oil. Dip a Q-tip in tea tree oil and pour clean water over it for about 10 seconds. Apply the Q-tip to the spot every few hours or so. That should get it within a day or so.

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  2. Dan, thanks for being one of few to share your opinions uncompromised. I've long been silently critical of ITSAN, ever since I found it in 2012. Their most recent solicitous email on the 16th pushed me to post a well-deserved criticism on the forum, for which I was immediately permanently banned. I can't even read the forum now. Not surprised.

    The email also solicited positive reviews on the third party Greatnonprofits, for which I posted a negative one. I hope you read it and give me your feedback.

    Additionally, thank you for persuading me to quit moisturizers in January, and for your additional information regardng it. It made my life exponentially easier and more comfortable. Has it sped up healing? I can't tell, but that's not a no.

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    1. PART ONE:

      Hi, first, congratulations for sticking to your principles and for doing something proactive to help others in the process! Second, welcome to the club ha ha! Someone did send me a copy of your post and I fully expected you would be banned. I just hope it stayed up for a while before they saw and deleted it. I hadn't heard of Greatnonprofits but will check it out. You are very welcome and even though we can't really know how much MW speeds healing we do know how much more comfortable and bearable it makes our recovery period. That's the important thing as you know.

      Personally, ever since I figured out Itsan was wrong I've always felt that after making these issues very public that anyone who supports them is part of the problem and not part of the solution. I know this statement will alienate more people from me but I don't really care as I also have principles and have to stick to them as best I can. Itsan could not do this if it weren't for so many people who help them do it. Practically every blog I've ever been to has a link to Itsan and speaks highly of them. Even people who have figured out MW and have done it. This has always been alarming to me. You will find no links to Itsan on my blog. Zero, Nada. To me that is like putting a link to a derm who prescribes ts on my blog. Let's face the truth here. People are giving Itsan praise on a constant basis and because of this new people come along and put their faith in the group only to discover months later they shouldn't have. Well, some do. The others that don't are still whining about how bad they are doing not realizing they are managing their symptoms in the worst possible ways. I actually lay a lot of the responsibility for this to bloggers for linking Itsan to their blogs and speaking so highly of them much more so than I blame Itsan. Now if Itsan had adjusted their policies and the way they run their little private forum I would feel differently. But they never did. Only made little adjustments to try and not look so bad, Not to help people. Just my opinion.

      For me, asking for donations is fine if done tastefully, but it's how they use the donations that bothers me the most. If they are leading people to believe that moisturizing is good to do, and diets and supplements don't make a difference, and the only way to heal is the passage of time, then they are causing way more harm than good imo. Throw in that, deleting peoples posts that have valuable information, banning people who don't agree with their ignorant ideas, and you have a very private forum run a few people who believe in the wrong things and who create a heavy "Groupthink" mentality, and toxic atmosphere. And let me be clear on this. If anyone thinks that the NEA will ever help they are not living in the real world.



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    2. PART TWO:
      I tried to ask for donations to start a real forum where people could help each other and share information but got zero response and one small donation in 5 months. So, what to do? We need a true tsw forum that is run by people who understand how to mange tsw symptoms for all the new people that arrive daily. Run by people who understand how the mind works, how the skin functions, how to actually help people with the "current" information available. Not outdated information coming from a select small group who have suffered for years and still aren't healed.

      In my opinion, the only good thing that Itsan has done is to bring everyone into one place. But I have to wonder if it really is a "good" thing. Unfortunately, they have negligeted to help these people, and instead ended up doing more harm than good (my opinion). Not to mention the confusion they have created about MW and it's benefits when people such as myself have shown them that it works much better than moisturizing does. Even after banning me they continued to try to discredit and marginalize me because I was able to convince people to try MW on their blogs and their attempts at discrediting me only created lots of confusion for people who were considering MW and ended up delaying people finding out the truth all that much longer. Again, these are just my opinions. Many long time tsw vets have aided Itsan in this effort of discrediting myself and others and they all should be ashamed of themselves. Not being open to new ideas is about the most ignorant thing people can do. We don't still amputate legs with a hand saw and no anesthesia do we? Then why are these people so intent on not changing with the times? So, you are either part of the problem or part of the solution. Congrats on being part of the solution. I hope others follow your example. And, thank you!

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    3. <>

      This is exactly my opinion. Your primary concern seems to be their censure of alternative treatments that have been proven to be effective. For me it is that they are the most prominent source of information on TSA, but present themselves dubiously and unprofessionally, such that people uninitiated to TSW will find it easy to write off it and any other sources of information as bogus. Others may have their own separate reasons for not supporting ITSAN. In any case I think the natural, historically proven solution is to make a better alternative option available, rather than putting vain effort into improving the one that exists. As you have said, albeit in more detail: by participating in something in any way, you are increasing its power.

      I too have looked into creating an alternative forum, and have found how prohibitively expensive it is for someone like me with no job. When I am working again, however, I'd be on board with you for the creation of a forum that is better run with little to no censure. Preferably with literally no bias from its administration toward any given method of treatment; only a well designed, easily navigated space for people to find the information they need, in whatever form the member see fit to contribute.

      I also have my own personal projects planned for when I am completely healed, which will be sooner than most. Blogging isn't really my thing, I'll leave that to others :)

      Keep doing your excellent work.

      Andrea
      oholof at gmail

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    4. I quoted you in the brackets above but the formatting messed it up:

      In my opinion, the only good thing that Itsan has done is to bring everyone into one place. But I have to wonder if it really is a "good" thing.

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    5. I just read your review on Greatnonprofits and registered myself so I can write my own review of Itsan. It was a very good and honest review. So happy someone is being proactive on this! Social media is not my thing at all but my concern has always been for the thousands of people who learn the wrong methods to cope with tsw from this well meaning but ill informed group of vets. Seeing so many people in so much pain when they don't need to be just drives me crazy.

      I also have always been concerned how Itsan uses it's donations as well. I feel they waste the money on things that don't really help at all when it could be used for much better purposes. They are barking up the wrong trees and should be focusing on pulling everyone together and encouraging them to spread the word to their own doctors, nurses, staff, friends neighbors, etc. Rubbing elbows with the medical establishment won't get them anywhere. And no, they don't need much money to do what needs to be done which is simply operate a good forum where people can learn information. That is why people go there in the first place but then they get caught up in the self pity trap but feel good as they are part of the "group". After that they don't want to be cast out of the group or criticized so they fall into line like little Nazi's. I encourage everyone to read my "Groupthink" post.

      Anyone can request a form 990 by writing to the IRS, including the name of the organization and the tax year you wish to review. I plan to write soon as I am very curious as to exactly how much of the donations are spent on salaries for you know who for 2013. I've just been waiting for this years tax deadline to pass before writing. I want to see 2013 data. I encourage everyone to write and get this info and publish it on their blogs.

      Commissioner of Internal Revenue
      Attn: Freedom of Information Reading Room
      1111 Constitution Avenue, NW
      Washington, DC 20224

      See more at: http://smallbusiness.findlaw.com/incorporation-and-legal-structures/nonprofit-financial-statements.html

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  3. It's not a good thing. That is the problem. I knew as most do, exactly what I had to do before ever finding Itsan. We all figure it out before finding them. They only confirm what we figured out on our own. Actually, not Itsan, but the other members of Itsan. The problem is what happens after that. I was convinced I needed to moisturize my skin from landing on that site. Oh what a mistake that was! Many are convinced not only to moisturize, but also that nothing helps speed recovery so do whatever makes you comfortable. And all the BS about how people are so different. It makes me ill to think about it. I tried to email you but apparently couldn't decipher your email addy correctly. If you post it in the normal form I won't publish it and that way I'll have it and can send you mine.

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