My Nonprofit Reviews

I find these 1 star reviews interesting. I am a person going through
RSS/TSW. I am not an affiliate of Itsan in any way. I would like to
add my own response to some of the 1 star points that have been made.

1. Itsan makes money off selling people creams.

Itsan is a nonprofit. Yes NON profit. They profit from nothing.
Yes, there is a woman affiliated with Itsan who makes her own
creams/balms and sells them on Etsy. No Itsan does not make tons of
money from their sale or advertise them as a cure to RSS. Even the
woman who makes the creams does not advertise or sell them in any way
to people in the forums or groups. She does 1-2 give away type things
a year, around Thanksgiving time, to give FREE balms to people in
need. She NEVER acts like these balms will cure RSS. They won’t, just
like nothing else will besides time. They are for comfort during
withdrawal, and/or to be used during natural childhood eczema.

2. A derivative of #1- Itsan wants people to stay sick so they can
make money off them. They even ask for donations.

Just a reminder about that nonprofit thing. No reason for them to
want people to stay sick, because they make no money off of anyone.

Yes, Itsan asks for donations. As with any nonprofit, the
organization will not run without donations. The money goes to many
things including website upkeep and plane tickets to and attendance at
Eczema and Dermatological forums and meetings, etc. Look up any
nonprofit organization and there will be funds received to keep the
organization running. Truly the goal of Itsan is to eradicate the need
for itself. The goal is to get enough information out in the world
about the possibility of Topical Steroid Addiction (TSA) that people
can make informed decisions about using topical steroids and hopefully
never become addicted to them in the first place. NO TSA = No need for
Itsan.

3. Itsan is steroid phobic and is telling people that steroids cause
RSS when actually it is a staph infection.

To address the first part of the sentence, Itsan is not steroid phobic. They are very clear that steroids have a place in the medical world. The issue is not necessarily steroids themselves, but how they are being prescribed. Topical Steroids should not be used long term, nor should they be used on areas such as face, groin, and skin folds. It is well known that absorption in those areas is much higher. It states this in most pamphlets but then adds this magical little blurb "unless directed by a medical professional."

If every person suffering from RSS only had to contend with a Staph infection, wouldn't you say those same people should be able to discontinue steroid use with no difficulty once the infection has been cleared? This does not seem to be the case. Speaking from personal experience, I have no active Staph infection (which has been verified through lab testing), yet am still going through RSS. I have yet to hear of someone from the Dr. Aaron camp (those that say the "cure" is to use a steroid cream mixed with topical antibiotics diluted in an emollient in order to taper off the steroids) actually taper off the creams fully.

Speaking from my own personal experience, I have seen vast and major life improvement since stopping topical steroid treatment. On 10/3/14 I was sitting at my computer with my legs propped up and my "eczema" red and weeping through towels I had wrapped around them. All I can remember thinking is "how can this just be eczema, it keeps getting worse, this isn't normal." I had been using topical steroids (TS) for 4 years at that point. I developed a small nickel sized rash on my left hand after the birth of my daughter. I left it alone for a few months in hopes that it would go away, but when it persisted I went to my PCP. She referred me to a dermatologist. Without asking any questions about possible causes of my symptoms, he prescribed Triamcinolone. It worked in the beginning. I used it as prescribed- 2x/day for 7 days. Then I would go without for 7 days. I started to notice that the days I was using the ointment my hand would improve, but it would get bad again during the days I was not using it. I went back to the derm. He decided I needed a stronger ointment and prescribed Betamethasone, telling me to use it under saran wrap at night. Again I noticed that the days I wasn't using the ointment my skin would get worse. Then I slowly stopped seeing improvement even when I was using the ointment. Eventually my eczema spread from just that small nickel size spot on my hand to cover both hands and elbows and the lower portion of both legs.

I immediately stopped using the steroids when I found Itsan. Things have not been easy, and it truly is a hellish experience. I was red, weepy, itchy, raw, burning, emotional, unable to regulate body temperature etc etc for months. I am 16 months in and I have a quality of life again. I still deal with skin problems daily, and still have flares that are pretty awful, but I am able to be me. I 100% believe that I made the right decision. How could I possibly go back to using steroids when they stopped working for me to begin with? The first picture is 13 days off steroids, this is really similar to what my legs looked like while still using steroids but with some weeping and edema added in. The next picture is 15 months off steroids. No creams or potions or money paid, the only thing I did was to stop using steroids. That's it. If the steroids weren't the problem, why did my skin get so much better?