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2021 Top-Rated Nonprofit

International Topical Steroid Awareness Network (ITSAN)

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Nonprofit Overview

Causes: Health, Health Support

Mission: ITSAN raises awareness of Topical Steroid Withdrawal Syndrome and supports all affected individuals.

Results: ITSAN helps bring patients and doctors together by providing education and patient perspective on this preventable outcome. Topical Steroid Withdrawal Syndrome is an iatrogenic condition, related to tachyphylaxis, that can occur with escalation of topical steroid therapy. We also are participating in research and publishing using surveys of the TSW and eczema communities to learn more about this debilitation condition.

Target demographics: Raise Awareness of Topical Steroid Withdrawal Syndrome, also known as Topical Steroid Addiction, or Red Skin Syndrome

Direct beneficiaries per year: hundreds of people find scholarly, peer- reviewed information about their condition, and the support of thousands of members of our online support community world-wide.

Geographic areas served: on a global scale

Programs: a powerful website full of resources, active and growing support groups, and a committed team of volunteers working on education and awareness for members and doctors.

Community Stories

383 Stories from Volunteers, Donors & Supporters

12 Amy_260

Client Served

Rating: 5

Itsan is an important and incredibly helpful organisation which raises awareness, and offers support to people recovering from 'eczema' caused by topical steroid creams. It saddens me to see people commenting that Itsan encourages torture. Because the truth is that, yes, recovery from steroid cream truly does feel like torture. Unfortunately, like with any drug addiction, the only way to recover is to cease use and ride out the hell you will be initially in for. I truly feel for the people who have tried to quit steroids to recover from their steroid induced eczema, only to find the process too physically and emotionally painful to continue. However, Itsan does not offer a way to torture yourself, it offers hope and it offers recovery! On the other side of that torture is freedom from your skin condition, comfort, and health. People are saying that Itsan is not helpful as it is steroid phobic. This steroid phobia is real, and it is born of a very real and consistent experience; many people who use steroid creams live a life of continuously worsening, burning, and itchy 'eczema'. When they quit steroid creams their drug addicted skin flares horrifically, yet once the steroids are out of their system they are cured! After years of worsening eczema and steroid use I quit and experienced a year of flares like nothing else, it was so hard to endure and yet I endured it. That was three years ago now, for the last 3 years I have lived 100% free of anything that resembles eczema!! Discovering steroid addiction was the best thing that ever happened to me! Itsan was my support system when I was in hell with no where else to go, there is a forum to vent and discuss the experience you are having, and it makes it all a little easier to bear. I would give Itsan 5 stars for raising awareness, and another 5 stars for the advice and support offered by the helpful, hopeful, and supportive community! Below I have posted the last 3 photos as an example of how I looked within days of quitting steroid creams (I was barely better than that before that). The first photo is me now, with the clear comfortable skin I have been enjoying for three years thanks to itsan.org!!!

Comments ( 1 )

ITSAN ITSAN thanks you Amy for a fair and honest review. We in no way want conflict with the supporters of Dr. Aron and never talk down, troll or flame this group. Our leadership also never advises anyone to stop topical steroid or condemn them for using it. We share our stories and let them make that decision on their own. What the support group member say or do is out of our total control but we do have rules and admins, do their best to monitor behavior in them. We understand the agony of topical steroid withdrawal, not everyone get's addicted and are teaming up with doctors from around the world to find better methods of comfort for those in the thick of it. A big concern derms, doctors and ITSAN has with the Dr. Aron method of treating children with eczema is the fact that steroids are applied 6 times a day for 6 months and then used as maintenance for indefinitely and if any children get off the treatment, it is not well known. Eczema was never classified as a lifelong disease to be controlled with corticosteroids as they have too many well-documented side-effects. The other concern is the use of antibiotics with the steroids which is causing health problems with many in the world in causing super-bug resistance. India just banned many of these combo medications. "Doctors and health experts say the spread and misuse of antibiotic combinations may be contributing to antibiotic resistance in India. Some superbugs, which are strains of bacteria that have become resistant to antibiotics, have been found in patients who traveled from India to countries including the United States and Britain." http://news.yahoo.com/antibiotic-combination-marketed-abbott-india-list-banned-drugs-061739305--finance.html Steroid cocktails, which are in fixed dose combinations, are mixed with various antifungal and anti-bacterials thus making the drugs extremely dangerous and irrational. Use of irrational topical steroid combinations can lead to drug resistance. “Dermatologists are seeing increasingly widespread fungal diseases where the use of irrational combination drugs has been implicated. The fungal diseases do not respond to conventional drugs for conventional duration and dose,” said Dr. Shyam B Verma, dermatologist based in Vadodara, Gujarat. “Indian doctors are witnessing a pandemic of adverse effects induced by topical corticosteroids,” Dr. Verma writes in a news piece published on Thursday (November 26) in the medical journal The BMJ. "Topical steroids can cause substantial and permanent damage, especially to thin skin such as on the face and groin, even if used for a short period of 15 days. Side effects include pigmentation and atrophy of the skin. “Misuse of steroid combinations can cause bacterial or fungal resistance, which can make infections difficult to diagnose and treat,” Dr. Verma writes. According to a 2011 study, nearly 15 per cent of dermatology patients were found using topical corticosteroids. Of the 15 per cent, over 90 per cent had adverse effects." http://m.thehindu.com/sci-tech/health/irrational-topical-steroid-combinations-can-cause-drug-resistance/article7918516.ece ITSAN is teaming up with the Indian dermatogists along with others in the medial field to raise much needed awareness of the potential of topical steroid addiction and serious side-effects from unmonitored or unsafe use of this drug. We care and hope for better methods of coping as well for those who are suffering.

General Member of the Public

Rating: 5

If it was not for ITSAN, I would never have understood what was happening to my 8 year old who was experiencing steroid-induced eczema/steroid withdrawal. The page "For Doctors" helped me communicate with my GP and dermatologist on the symptoms. The "Coping with TSW Syndrome" page was so helpful that I cannot imagine without having such information as none of our doctors could tell us what was installed for us.

Barbara E.2

Client Served

Rating: 5

This group was a lifesaver for me. I was a lifelong user of lots of different steroids (40+ years) I was at the end of my rope physically and mentally ( red all over, burning etc...) i went to a Dermatologist and he prescribed Clobetsol for my back. That really put me over the top and I got even worse. I found this group and then knew what really was going on for me. I didn't have severe eczema- I was in TSW already and then quit all my steroids cold turkey. This group is just the best group of understanding people. Thanks so, so much for everything!

General Member of the Public

Rating: 5

ITSAN has been extremely helpful and supportive throughout our daughters TSW journey. I’ve found informational resources from their website that has helped me find supportive doctors, navigate discussions with current doctors, and stay informed with current strides in the medical community regarding the harm topical steroids can cause. They’re prompt and kind when replying to emails and have gone out of their way to provide our family with the utmost care and support.

General Member of the Public

Rating: 5

I have learned so much from this incredible group.

They changed my life.

General Member of the Public

Rating: 5

Thanks for the great source of information that you are. You do a great job. Thanks to you I could put a name to the condition, I knew I wasn't alone.

Donor

Rating: 5

My daughter went through Topical Steroid Withdrawal which is so horrible you can’t even imagine. ITSAN provided a wealth of information where every doctor we saw fell short. They were a place I could go to find real stories of recovery and also access academic research papers to give to our doctor and my daughter’s school. I also know they have been working tirelessly to bring awareness to the world about this condition to help prevent others from suffering. I know all of the people who work at ITSAN have a connection to Topical Steroid Withdrawal, either having gone through it themselves or cared for a child or close family member who has so I understand the desperation to prevent anyone else having to go through this and I truly appreciate all they have done towards this. As a mother of a child who has dealt with this condition I am so grateful there is a group of compassionate, smart, dedicated people to speak for us.

General Member of the Public

Rating: 5

In all honesty, this company changed my life. After going though extreme suffering and doctors prescribing me stronger and stronger steroids that were no longer having affect, I had had enough and started hunting for answers. I count my lucky stars that I stumbled across ITSAN. Their website clearly explains what TSA/TSW is and has lots of helpful links for people wanting to learn more. I love that they have a whole section "for doctors" as so many are uneducated about TSW, and gives us an opportunity to point out what we're going through.

As well as having all of the information on the website I have had a personal email from one of the staff at ITSAN who went out of her way to give me advice and send me some relevant links. She showed me how much they all care for each individual and how much they want to help.

Last but not least the ITSAN facebook group is just the most wonderful group of supportive and caring people. It's invaluable for us all to have a space to connect and support each other along our journeys; have an ear if we need to vent, and update each other with progress. I couldn't be happier to have found ITSAN.

Kimond C.

General Member of the Public

Rating: 5

Guidance, support and hope is what I needed to get through with my condition. ITSAN provided that.

Client Served

Rating: 5

ITSAN was the best thing that has ever happened to me. My whole life I was told “you’re complicated” and prescribed stronger steroids. As a result, my body became addicted and when I ran out of cream, my skin reacted worse than I had ever seen. It wasn’t until I found ITSAN that I finally got my answers. The pain, emotions, and unknown timeline of TSW is nothing short of horrific. However, every splash of ooze, piles of dead skin, sleepless nights due to scratch fits, and the depletion of energy, collagen, and self esteem was beyond worth it. Once I started to heal, my skin grew stronger and has been the healthiest I’ve ever experienced in my 23 years of life. 21 years of topical steroid use, 33 months (almost 3 years) TSW. Thank you ITSAN and the community that built my new family. This organization has truly saved my life and I have met people around the world who spark true inspiration.

Isabel H.

General Member of the Public

Rating: 5

Saved my life from topical steroid abuse, a great resource for TSW sufferers worldwide!

General Member of the Public

Rating: 5

Thank you ITSAN for always advocating for the TSW community. ITSAN was a lifeline for us when my son went through TSW. Now they are advocating at the highest levels to educate individuals, families, doctors, and even the FDA. Thank you again for all that you have done and continue to do ITSAN. So many people's suffering will be shortened or avoided altogether because of your work and compassion.

Volunteer

Rating: 5

Itsan helped so much with information.

When I found my 4 year old daughter is going through TSW, I found this page so helpful.

Founded similar stories and pictures to ours.

Details from tsw was so helpful for me.

This was my first line source of tsw.

Thank you very much for your work!

General Member of the Public

Rating: 5

Itsan gave me answers when I had none. They are so special and needed in our community. Don’t know what I would’ve done without them.

General Member of the Public

Rating: 5

Itsan has been real help for my 6 year old son.. he's recovering slow but he definitely is!!!

Tom D.1

Client Served

Rating: 5

ITSAN allowed me to confirm my suspicions I’d developed TSW and gave me the confidence to find a path towards healing. I’d be lost without them.

Writer

General Member of the Public

Rating: 5

Saved my sons life! Will forever be grateful Used topical steroids for 4 yrs on him and he just kept getting worse. Took 28mns to completely heal from red skin syndrome but we did heal! 8 yrs later and my son uses nothing on his skin and it’s beautiful.

Previous Stories
29

General Member of the Public

Rating: 5

ITSAN saved mine and my son's lives. My hands stated blowing up like balloons with ooze and blisters from Appling TS Triamcinolone on my son for 4 years, directed by our pediatrician. After moving to another State and seeing a new Dr who warned me of the dangers I found ITSAN. My son would break out into hives evey time he flared and I didn't have his TS, would take him to his Dr and he would be put on prednisone and more Triamcinolone. I finally knew what was going on. He was addicted. Thankfully our new pediatrician listened and agreed to stop all steroids. It was hard the first year, I had to wrap him 3 times a day over his moisturizer and give him Lots of antihistamines with my horribly flared hands as well. We are now 28 mns Steroid Free and loving life again. We DO heal without steroids and I'm so thankful for ITSAN for supporting us through the hardest time of our lives. Keep spreading Truth!!!!

Rebecca L. R.

Client Served

Rating: 5

ITSAN was a life savior for me during my withdrawal from steroids. The information provided on their website is so informative and the ITSAN Facebook page helped me daily with my crazy, debilitating symptoms. Thank you ITSAN for being here for us!

General Member of the Public

Rating: 5

ITSAN has so much information to offer you as you begin your TSW journey or if your in the middle of your journey. It helped me find so much information on the different stages my son would go though and what to expect. My son is 7 months TSW and I still find myself searching for more information on this website. I had a doctors appointment and printed documents to take with me to the visit in order to explain TSA and TSW. I’m so grateful for this organization!

Nela S.

General Member of the Public

Rating: 5

Going in blindsided during my TSW journey, I was desperate to find others who are/had been going this TSW! I am so great full for ITSAN! It gave me HOPE AND FAITH!

2

General Member of the Public

Rating: 5

Itsan provided free education materials online which helped me realise that my baby was going through Topical Steriod Withdrawal. After further research, I was able to find a local doctor in Australia and we ceased using topical steroids. My daughter is now recovered, and I thank you wholeheartedly. To think that it would have been something that would have lasted her whole life had I not realised and made the difficult decision to wean her off the medication that was hurting her

General Member of the Public

Rating: 5

You're going to have to excuse me because I'm not making the comment about your program my name is John Smith 57 years old and I'm from Summerville Georgia I live in a mobile home that I rent and the building inspector came and he's going to condemn the mobile home on June 22nd is when they go to court to give the landlord because I Elations and condense mobile home I've look for places to stay and no one's ready right now get a movie on the streets last month I had a heart attack to all the stress and everything going on in my life I'm scared that but being on the streets and living there no place to go now I have congestive heart failure and I go to the heart failure Clinic in Rome Georgia I know that I'm asking for something that not dealing with a new program doesn't deal with it and I'm begging people to help me I need to get furniture in try to find a place and also I'll put it down payment in the first month's rent anything and everything I'm saying I can show your copies of everything I've had a heart attack like the prettiest I just fed and part where they're going to condemn it if there's anything you can help me with which I am begging but nobody's responding to my emails and they go to court next Tuesday and I'm scared I'm going to be on the streets please help me if you can I appreciate anything you need to see about everything else that stated you can reach me by email and I'll lose my number Bi-Lo thank you so very much John Smith
Phone 706-506-0308

Client Served

Rating: 5

Lorri and her Angel's were a blessing you have no clue. I was very very stressed about feeding my girls I'm in a rural area we have nothing here. She and her Angel's blessed me with food and house hold essentials for once it was nice waking up to make breakfast for my girls. Forever in my heart I am grateful they themselves will be blessed

2

General Member of the Public

Rating: 5

ITSAN is doing the impossible and advocating for the most deserving community of patients suffering from an unimaginable disease. Please consider donating today!

2

Client Served

Rating: 5

They're doing what they can to prevent a preventable illness! As an unfortunate long time topical steroid user, ITSAN's website, facebook communities, and videos have been extremely helpful in learning about TSW. I've been trying to find information on my why my skin, food sensitivities and allergies have been getting increasingly worse. I knew there was an underlying reason and doctors (even specialists - I've seen many!) have always been dismissive. Finding ITSAN has answered a lot of the questions I had and alot of questions I didn't know I should have had as well. I still continue to learn from them and their facebook community. Overall, it's a great non profit that really is trying to help people and create awareness.

2

Client Served

Rating: 5

Because of itsan i have found support in my tsw journey

3

General Member of the Public

Rating: 5

I honestly can't thank ITSAN enough for helping me get to the bottom of my skin problems. I had seen many doctors and dermatologists who were unable to help (infact they made it worse). I wish everyone knew about the dangers of steroids- than goodness for ITSAN!

3 Writer

General Member of the Public

Rating: 5

I have been going through TSW approx 5 years . I found this organization right around this time. If it wasn’t for them I would have had no idea what was going on with me. They keep me informed of all the latest news - with lectures , videos, member stories / and general information and tips on what to expect and the support needed going through this horrific condition...Sandy Weinberg

Previous Stories
9

General Member of the Public

Rating: 5

If it were not for this Support group I would have continued using steroids and never would get better. ITSAN has made me aware of what myself and others have gone through. People need to be aware of the dangers of steroids. This non profit agency needs to be recognized and hopefully will help others along the way going through TSW.

4 Jessica L.18

Donor

Rating: 5

Finding this amazing organization literally saved my life! I’m so incredibly grateful for these wonderful people who work so hard to prevent this preventable condition from continuing to happen!

5

General Member of the Public

Rating: 5

They are very good support group . I am thankful for this nonprofit who helped me survive through the darkest hour of at TSW

2

General Member of the Public

Rating: 5

Awesome resource for people and families with members suffering from a reaction to topical steroids. I have a nephew who suffered with this for years, and ITSAN helped orient his family and turn things around. He's doing much better now.

3

Volunteer

Rating: 5

ITSAN has truly saved my son's skin, as well as his health. Without ITSAN providing scholarly, peer reviewed reasearch, as well as member to member tips and encouragement, my son may not be well to this day. Nothing we did helped him or restored his health, until we learned about Topical Steroid Withdrawal Syndrome. It was only after going through horrendous withdrawals that his growth delay turned around, and his heart murmur (along with thickened heart wall and enlarged heart) resolved. I credit the tireless volunteers with putting this condition on the map. Thank you ITSAN.

3 Kristina V.1

Client Served

Rating: 5

This organization saved my daughter from on-going immense suffering—something umpteen doctors couldn’t do. My daughter is living life to the fullest now, no longer prisoner in her own skin. Forever grateful for their dedication to helping others and raising awareness about Red Skin Syndrome caused by topical steroids. Their website is informative and support groups invaluable— a true life saver. Thank you!

2 Caroline L.2

General Member of the Public

Rating: 5

Almost 6yrs ago my skin was red, burning, I felt like and looked as if I'd been dipped in acid, my skin oozed , I was bone deep itchy 24/7 and my skin came off everywhere.
These were symptoms that lead me to Itsan and finally understanding that I had Red skin Syndrome/Topical Steroid Withdrawal, a very misunderstood condition caused by topical steroid use.
Itsan has been my lifeline while living with this condition. It is an amazing organisation, that's done so much in providing support to those suffering but also to furthering the education of RSS/TSW with the public, the medical fraternity and with government through advocacy, webinars, lobbying and sheer determination. Their website holds a wealth of information. Thank you Itsan for being such a great support to me and so many others

2 Loren M.

Volunteer

Rating: 5

ITSAN saves my sons life and skin! We would have been lost with out them! Thank you ITSAN!

Previous Stories
14

Board Member

Rating: 5

Itsan saved my son's life. My son klines skin was terrible on topical steroids..he had a full Body rash and the doctors kept upping and upping his steroids use. They were no longer working and burned his skin terribly. Without itsan we would have never known about red skin syndrome, we would have never had the support that they have provided to get us through this terrible syndrome. Itsan and the other sufferers and caregivers have become not only our support but also our family....and our "family" lives all around the world! Without itsan, I truely believe my son would have had a life time of extremely terrible full body eczema. I can not thank itsan enough for all they do, spreading the word of red skin syndrome and all the support they offer not only the sufferers but the caregivers too. Amazing non profit!!!!! If I could give them an infinite amount of stars I would!! Thank you itsan and kelly palace with all of my heart! Here is my son kline's journey http://klinestopicalsteroidhell.blogspot.com/

Review from Guidestar

1 Donna Lyons R.

General Member of the Public

Rating: 2

This is my grandson Oliver's story. He was diagnosed with severe atopic eczema at the age of one month. We were told to use over the counter hydrocodone on the red spots. We did and they would return so the doctor prescribed triamcinolone betamethosone and protopic. These potent drugs were used for 7 years until I learned the truth by googling Red, Skin and Oozing which led me to itsan.org. Thank God literally. If it weren't for Itsan we would still be living a nightmare. I am ever so grateful for this non profit. It was an answer to my prayers. Oliver was hospitalized many times for his skin. He had chronic staph and severe sinus infections. He started TSW in 2017 at the age of 7. He is 10 now and still having some skin flares but nothing like before. Since withdrawing off the steroids he has been healthy and not been on antibiotics! He is in school, thriving and living life to the fullest! Thank you itsan for all your tireless efforts. Without you we would still be in the trenches fighting this war without ammunition.
God Bless, Donna. (Nanna)

2 Rochelle R.2

Client Served

Rating: 5

The co-founders of this nonprofit literally saved my life!

3 e3sweet

Client Served

Rating: 5

For many years my son's eczema was out of control. We had gone to many doctors and even National Jewish Hospital in Denver with no help at all. In September 2014, I was given a website off an Amazon review for hemp oil (anything to help his skin). I sat down one night and looked up ITSAN and knew immediately that my son had every sign and symptom of RSS. We then started his long 5 year journey of TSW (9/12/19). Over the last 5 years I can not thank ITSAN and everyone in the groups enough. When I was at my lowest points with TSW and watching my son go through so much pain, I was comforted by other parents who had gone before us and also those TSW'ers who were also suffering. Even though my son is 95% healed now, I still stay involved as much as I can to help those just starting this awful journey.

Previous Stories
23

General Member of the Public

Rating: 5

Lifesaver! Thank God I found this site. I had no idea the topical steroids that were prescribed to him were actually hurting him for 8 years! Nightmare! He is now on the road to recovery.

3 Andrew Z.2

General Member of the Public

Rating: 5

After watching my grandson being tortured with unbearable itching, my daughter found ITSAN and embarked on a course of action that cured him. It was a godsend!

1

Client Served

Rating: 5

SO, SO, SO grateful for the information that ITSAN provides! There are next to no doctors currently informing patients about the possibility of becoming dependent on topical steroid creams leading to a harrowing withdrawal and iatrogenic condition. After using these creams for over 20 years for my mild eczema, I started to develop a wide array of allergies. Discovering the correlation with long term topical steroid use, I weaned myself off of them - little did I know what was to ensue. I was bed-ridden for 1 1/2 years, lost my hair, developed a cataract, had horrible itching burning skin for years afterward. I am now doing amazing - have my life back and am just dealing with a few itchy spots on my knuckles and back of neck, which I believe will eventually heal as well. ITSAN was such a support through the worst of it - offering hope and guidance when no one else was.

2

Board Member

Rating: 5

ITSAN saved my life!! I would've never known what TSW was or how to cope with the healing process if it wasnt for the community and support of ITSAN. I'm so proud of the awareness the organization works for and how many people are being served because if it's good work! I am so happy to now serve as a board member and continue to foster our coordinated efforts!

2 Writer

Client Served

Rating: 5

ITSAN has been a lifeline for me and I could never thank this wonderful organization enough for everything it has done for me and all the TSW sufferers out there. The intention behind the foundation of ITSAN are completely pure and genuine and it’s reflected in everything they do.

Previous Stories
6

Client Served

Rating: 5

ITSAN is probably the only real support group for people going through Topical Steroid Withdrawal. Their main goal is to spread awarenesa and stop the excessive and careless prescription of steroids

2

Client Served

Rating: 5

Thank God for ITSAN. This site has helped so many, including me, to finally figure out what doctors could not tell us: why our skin rashes were worsening and our lives unraveling. For many, steroids are toxic at levels that many doctors prescribe, and the ramifications are absolutely devastating. Thank God for a nonprofit that helps people suffering from steroid overuse figure out how to finally heal and helps to educate doctors about the dangers of long-term steroid use. I don’t know where I’d be without ITSAN!

2

Client Served

Rating: 5

The only reason that so many people become aware of exactly what has gone wrong with their skin after having used topical steroids, is ITSAN. This is an iatrogenic skin condition that is surprisingly devastating and semi-permanent. Many people are home-bound due to immobility and oozing skin - for months/ years at a time. Yet doctors do not acknowledge this condition - ITSAN is the single, unifying factor that supports patients, establishes ties to the medical community, and drives for research. A top notch organization.

2

Volunteer

Rating: 5

Thank you ITSAN! FIVE STARS! The truth is, any negative reviews are not from anyone who ever was or ever will be affiliated with ITSAN. Please do not take the one star reviews seriously. They are selling a product that contains steroids and antibiotics that kills "staph" on the skin and supposedly "cures" eczema. Our community can not use steroids and were damaged by steroids. Because we can not use products with steroids, we can not use it, and we do not recommend using this product to our community. Because of this, proponents of the steroid/antibiotic mix comes in, writes multiple 1 star reviews, and has everyone they know click "found this review helpful." You can see most the of 1 star reviews have at least 14-17 "found this helpful." That should be a tip off that it's a fake. The 5 star reviews are legitimate and just placed by an individual --not a group. The 5 star reviews may have a few "likes", but they weren't written as a group with an agenda or axe to grind. ITSAN saved my child's life. It is run by the best humans on earth. It is unfortunate the type of trolling they have experienced by grown adults.

Review from Guidestar

2

Volunteer

Rating: 5

ITSAN is provides information and support that is other wise unavailable or goes against the grain. They are not an organization bought and paid for by big Pharma. They are not an organization with a doctor wanting everyone's money. ITSAN is run by volunteers. And it is absurd to see people say their eczema was cured because they had a staph infection. Most people who come to ITSAN have tried EVERYTHING, including antibiotics for a staph infection!
ITSAN saved my wife's skin and they are a great organization. Do your own research!

2

Client Served

Rating: 5

This is an amazing organization that saved my skin. After years of full body eczema, and escalating use of topical steroids, I am now clear of eczema for the first time in my life. And medication free. The withdrawal process was horrible and long, but that is what the body must do to heal. The naysayers on these comments (1 star reviews) are like saying let a heroin addict stay in the medication, because withdrawal is too hard. These are confused parents that don't want to put their kids through what needs to be done before their healed. Down the line they will see the truth. This approach is back by many medical research articles and when they say it is not, they are lying. ITSAN is doing great work. Change is tough for most people. Leaders are often criticized. ITSAN is a leader in health recovery! Thank you ITSAN!

3

General Member of the Public

Rating: 1

This organisation glorifies suffering. Take lots of pictures of your flaky red skin and post an update every week or keep a blog and you will be know as a TSW warrior!!!

It's a crying shame that this organisation knows of a better way to heal yet censors it from their poor suffering followers, it really is a bunch of brain-washed individuals leading people who are vulnerable and suffering, so sad and downright wrong. Even the founder of this organisation has distanced himself from ITSAN.

2

Client Served

Rating: 5

ITSAN saved me from a life of worsening "eczema" and constant suffering. Without ITSAN, I never would have learned how topical steroids were actually damaging and causing my unrelenting, spreading, and worsening eczema rather than treating it. The healing journey is long for many people (including myself), but the support from ITSAN somehow makes it more bearable.

2 Corinna3

Client Served

Rating: 5

I'd be lost without the knowledge and support of ITSAN -- they have made a world of difference to helping me understand what is happening with my situation!!! Love them!

2

General Member of the Public

Rating: 5

So supportive for a family member going through TSW

18

Professional with expertise in this field

Rating: 1

Not a group I'd recommend d. This group uses two non-peer reviewed studies to validate their theory that TSW is real issue. Sadly what they fail to realise is by stopping their medications cold turkey they allow a rebound effect to occur and when this happens the staph bacteria goes and has a party on their skin. They dismiss any medical help, actual no that's not true. They think taking black box medicine and suppressing the immune system is a better alternative.

17

Client Served

Rating: 1

My experience with this group was not a good one sadly. I had bright red skin, flaking everywhere, couldn't sleep, the itch was terrible, life was terrible. This group told me it is definitely a steroid addiction? Really? I found a different way that treated the bacteria that gets into eczema prone skin and when I said that's what I'd done they deleted me? I really think they are telling people wrong information or perhaps they just don't understand? They don't allow open discussion about the topic as they fear it so much. Why? Perhaps it challenges their belief system too much? Who knows? Perhaps they've suffered for so long that don't want to believe it has all been in vain?
My red skin was cured in two days and now I don't need any topical steroid anymore except for a tiny spot I get on the back of my neck and on my left wrist. I can go weeks without needing to use it. I can't understand why anyone wanting to give up steroids (if that's what they really wanted) wouldn't start where I have and taper off slowly. Honestly if that's the end goal, why put yourself through the horrible suffering. ITSAN are missing a huge point here. They could promote this better way and then talk to their "people" about avoiding triggers for flare ups, it would be a much happier place instead of a sad, depressing world of suffering.

17

General Member of the Public

Rating: 1

I don't think this is the right group to look to if you want to heal your skin, they seem to be so caught up in long term suffering.

33

Client Served

Rating: 5

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?

Comments ( 1 )

profile

ITSAN 03/16/2016

Thank you for a fair and honest review. ITSAN understand the reality of addiction to this drug and the painful process of topical steroid withdrawal. We hope that the future will bring more methods of comfort for those who are suffering from topical steroid addiction. ITSAN also never advises anyone to stop topical steroids or how to withdraw from them, we share our experiences and leave it up to the individual how to proceed. We also strongly encourage a supportive doctor's guidance for those who take this route. Our mission is not to have conflict with Dr. Aron supporters as we are sure he feels he is helping many children but there are serious concerns of the safety of his method to treat eczema. Using topical steroids combined with antibiotics 6 times a day for 6 months is not an approved method of treatment by the mainstream dermatologists. In fact India just banned several drug combos which include corticosteroid/antibiotics mixes due to the danger of using them. Topical steroid addiction or steroid-induced eczema has been studied and cited in medical reviews just as steroid-induced rosacea has. There are studies that date back to the onset of corticosteroids that prove it has side-effects that should be taken seriously and that eczema was never considered a life-long disease. The burn that comes with tsa is not a symptom of original eczema along with several other side-effects that come with the withdrawal. Here are some cited facts and the reason India just banned some of the same medications once thought to be safe. "Several studies report improvement of clinical scores after treatment.12–14 The use of crystal violet as a topical agent led to improvement in S aureus–colonized AD.12 Topical application of retapamulin also led to improvement of atopic skin lesions.13 The use of topical mupirocin was shown to reduce S aureus colonization and, in the short term, improve clinical scores.14 Nevertheless, improvement was temporary and carried the risk of potential adverse events such as contact dermatitis and enhanced drug resistance.15 Staphylococcus aureus–associated resistance has been recognized as a growing problem. A report indicated that resistance levels to fucidin increased from 2% in the past decade to 10% to 38%.9 In the face of increased prevalence of antibiotic resistance and the lack of satisfactory data on benefits, long-term use of systemic or topical antibiotics for AD is not recommended.15,16 When overt signs of bacterial superinfection are present on skin lesions, short-term use of oral or topical antibiotics is justified.15" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114666/ "In a recent study, researchers examined 75 patients (62 women, 13 men) between the ages of 18 and 60 who had steroid-induced rosacea-like dermatitis. The patients had used topical corticosteroids for anywhere from three months to 10 years. More than 90 percent suffered facial redness and hotness, and 97 percent reported burning or itching. More than three quarters suffered from telangiectasia (visible blood vessels), and 40 percent had the bumps and pimples associated with subtype 3 (papulopustular) rosacea. Many patients reported emotional stress, heat or sun exposure as triggers for their outbreak of symptoms. The good news is that effective treatment of rosacea-like symptoms due to topical corticosteroids is usually very simple: stop using the medication. " http://www.rosacea.org/weblog/great-impostor-steroid-induced-rosacea Steroid cocktails, which are in fixed dose combinations, are mixed with various antifungal and anti-bacterials thus making the drugs extremely dangerous and irrational. Use of irrational topical steroid combinations can lead to drug resistance. “Dermatologists are seeing increasingly widespread fungal diseases where the use of irrational combination drugs has been implicated. The fungal diseases do not respond to conventional drugs for conventional duration and dose,” said Dr. Shyam B Verma, dermatologist based in Vadodara, Gujarat. “Indian doctors are witnessing a pandemic of adverse effects induced by topical corticosteroids,” Dr. Verma writes in a news piece published on Thursday (November 26) in the medical journal The BMJ. "Topical steroids can cause substantial and permanent damage, especially to thin skin such as on the face and groin, even if used for a short period of 15 days. Side effects include pigmentation and atrophy of the skin. “Misuse of steroid combinations can cause bacterial or fungal resistance, which can make infections difficult to diagnose and treat,” Dr. Verma writes. According to a 2011 study, nearly 15 per cent of dermatology patients were found using topical corticosteroids. Of the 15 per cent, over 90 per cent had adverse effects." http://m.thehindu.com/sci-tech/health/irrational-topical-steroid-combinations-can-cause-drug-resistance/article7918516.ece

20

Client Served

Rating: 1

A steroid phobic community that encourages suffering. There are far less torturous ways to heal than this cold turkey method they encourage. ITSAN promote their way only and censor all other suggestions. I especially disagree with their ethos when it comes to babies and children.

4

General Member of the Public

Rating: 5

Thank you to ITSAN for providing the information. My daughter been using steroids but it doesn't helped at all. After we stopped, her skin is much more healthier and we see the huge difference! Keep helping.

20

Client Served

Rating: 1

Please see my photos below. I believed I had Red Skin Syndrome after years of ineffective treatment for my eczema. I spent 6 long, horrible months in the bath tub using no treatment ( except for Dead Sea Salts and Shea butter) for my skin, feeling miserable. ITSAN and their members encourage you, call you a TSW warrior and make you feel like you should stick it out because healing will come, when? A year, 5 years? Apparently the healing time correlates to how long you used topical steroids, I was looking at a good 7 year wait. F**k that!

Luckily I found another way and turns out I had an untreated staph infection on my skin for years.

A wonderful man by the name of Dr. Richard Aron healed me in a matter of days.

18

Client Served

Rating: 1

Not a place I'd recommend because of the high censorship and deletion of any whiff of an easier way to heal.
I guess it must be hard for the admins to admit there could have been a better way, especially when you've suffered or allowed your children to suffer so much. This organisation thrives on it's own pity and if you're not suffering you must not be doing it right. it's very idealistic to believe by using everything natural you will heal. I guess there is some truth in that but in this situation most people need medical help. Children have died at the hands of ITSAN, not a responsible organisation.

18

Client Served

Rating: 1

Itsan was very discouraging to me when I posted about other available options for treating my skin eczema. I was considering topical steroids and on mentioning this, I was made to feel like I was a horrible person. The one statement they kept repeating was that I was "delaying the inevitable". They believe that everyone who uses topical steroids is addicted. I do not understand the group mentality that exists in their forum but I am no longer a part of it. I am now back on topical steroids for the treatment of my skin, under the care of my doctor, and doing splendidly well!

8 CoFounderofITSAN

Former staff

Rating: 5

As the Co-Founder of ITSAN and someone that started this journey 7 years ago I still get daily thank you emails from people around the world that have had their skin saved and their lives returned to normal because of the information that ITSAN has provided for them.

In some respects ITSAN is a whistle blowing organization. Many people (Mom's whose kids are addicted to Topical Steroids, Doctors who use topical steroids, Organizations that want to keep the status quo and doctors/people making money on the internet promoting their own products) don't want to hear ITSAN's message. It is an urgent and valuable message based on decades of medical research.

When an organization like ITSAN is making this much of a difference--questioning current medical treatment methods, they are going to ruffle some feathers. Do your own research and you will see that ITSAN is an outstanding organization. GOLD level on GuideStar for Non-profits, a member of the Coalition of Skin Diseases. ITSAN is a volunteer run organization.

It is laughable when stated that "someone is making money" at ITSAN. ITSAN is volunteer run and volunteers work countless hours only to help others. The reason I left ITSAN, as the Co-Founder, was because I was working 40-60 hours per week on ITSAN, all volunteer hours. As a small business owner, I had to get back to my own business.

ITSAN is a well run, transparent, professional organization bringing extremely valuable information to the world. They deserve 5 stars and global recognition for this work.

5

Client Served

Rating: 4

I think some mean well but there is clearly someone making money from behind the scenes. Why censor other ways to heal if there wasn't money to be made. Such a shame as people continue to suffer because of someone's greed.

3

General Member of the Public

Rating: 5

Itsan is a wonderful organisation. I send thousands of eczema sufferers to their website from my blog (www.eczemahealing.blogspot.com), and every single person in need is welcomed into their community and educated on their options xo

4

Client Served

Rating: 5

This group saved my life. I was lost before and didnt really know whar to do when my eczema kept getting worst till i saw ITSAN and watched dr rappaport on you tube. Just knowing what i have and that i can be cured is an increfible and empowering feeling. Now im just looking forward to healing and maybe wearing a skirt w no stockings in summer. Thank you so much ITSAN.