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!!!
Never know and never heard TSW before we into this. We were life swimming in the ocean with no any support. thanks ITSAN, we learn a lot from it how to deal and expecting. life changing.
ITSAN was the first resource I found that helped me realize that I had been suffering from steroid withdrawal. I took the information they provided to my doctor and was officially diagnosed last year. Their resources have been invaluable throughout this awful process, especially their online support group, medical and scientific research pages, and their ongoing advocacy for those suffering with steroid withdrawal. I am so thankful for this group and all the tireless work they are doing on behalf of our community.
It was such an important resource for me when I was new to TSW. I felt listened, validated, and had a whole community waiting for me. Thank you for speaking for us and advocating for the unheard.
Now-days it is difficult to find the group people among whom one feels comfortable to express himself safely. ITSAN is a rare gem. It is coalition of people who are kind and supportive to each other in a search to ease or might even heal a very invasive and painful skin condition. In a short period of time I read so many genuine inspiring stories and found many helpful tips and suggestions. I belong to many different support groups. ITSAN by far one of the best .
I’m one of the unlucky ones to have developed TSW from 25 years of using topical and oral steroids. I’ve been to so many dermatologist for treatment and was constantly told that I (still) had eczema. Finally after posting about my condition on social media, someone referred me to ITSAN, and that was a major game changer. I finally realized that I was going through TSW and that I wasn’t alone. What a relief! ITSAN is a great community for us who suffer and need to vent or looking for a virtual hug. This condition is horrible so being able to talk about it with likeminded is so important for your mental health in the process.
I have been suffering from Topical Steroid Withdrawal Syndrome for over five years, and ITSAN has walked with me and has helped me understand and make sense of my suffering. They also advocate for patients and help spread the word to doctors that topical steroids are NOT safe and effective but in reality are DANGEROUS. Thank you ITSAN!
Previous Stories
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!
They have educated me about TSW. As someone who was lost when starting my journey, ITSAN helped to navigate my experience
Thanks to ITSan I started TSW, found the answers that the dermatologists would not tell me and my skin healing so well. What an amazing organisation!!! Thank you.
They are very responsive and great in participating in their community. I feel less alone since finding ITSAN and am thankful everyday for them and hope awareness is spread more.
This really has been a great support network for me. There has been hardly any support from the NHS and doctors are clueless on TSW. Coming here has enabled me to get the information I need to help me through this chronic illness.
This nonprofit is the only network that is seeking help to many people that suffers this extremely painful condition can last months even years of pure physical and mental torture and is totally preventable . Not a single person should suffer like this cutting their productive beautiful lives to live this inhumane condition . Thank you itsan .
ITSAN has been our support when we can't find support anywhere else. Without ITSAN we would be still searching these odd symptoms and being kept sick.
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.
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.
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.
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.
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.
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.
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
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!!!!
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!
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!
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
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
ITSAN is doing the impossible and advocating for the most deserving community of patients suffering from an unimaginable disease. Please consider donating today!
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!
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
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.
They are very good support group . I am thankful for this nonprofit who helped me survive through the darkest hour of at TSW
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.
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
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)
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
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!
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.
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.
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.
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
Incredible charity providing support, resources and awareness to those suffering from RSS. As someone who has been dealing with this condition for over 3 years, itsan and its network of others going through the same thing really has been a life saver, I will forever be greatful to itsan
This organization is faking reviews, asking their Facebook friends with no connection to the organization to leave reviews.
Helped my friend immensely! Typical steroids are a great medicine, but when done in excess or for people with steroid Sensitivities we really need people like this looking out for those in need!
Thanks to the work of ITSAN I'm now aware of the potential for topical steroid dependency and have moderated steroid use in my children with eczema. Prevention is better than cure, thank you for your work ITSAN.
This organization has been incredibly supportive and empowering for a friend who has been struggling with withdrawal for many months. Very thankful for its work.
This page has become a place to state opinions on the benefits and negatives of not just ITSAN and the other connected Facebook Groups but the very thing they all encourage - TSW.
It is disturbing how hear-say is blatnetly passed off as fact by admins and others in these groups. People are advised - 'oh yeah it's probably not infected, just stick with it, and oh yeah it is probably TSW' - whatever they present.
The Dr who once started ITSAN has now distanced himself from it, that speaks volumes.
These groups are depressing places where not treating your skin is celebrated and people are not encouraged to seek medical advice. There are a lot of people in poor mental health and undetgoing unimaginable suffering, all the while saying ITSAN has saved them.
They say they just do what they do with no effect in others, but they are convincing others that they need to do the same.
People diagnose themselves just by matching photos up, it is horribly dangerous.
It's a good way to distribute information that helps people make better educated decisions about topical steroid use
ITSAN has helped my sister greatly. She has been suffering from topical steroid withdrawal for about two years and the support of the community has given her the strength to carry on many times when she was at her wits end .
This charity helped my friend whose daughter has been dealing with topical steroid withdrawal! So happy there was help for her!
ITSAN helped me get my life back. If it wasn't for this organization, I wouldn't be here right now! They do everything they can to spread the word of the dangers of topical steroids, and support those of us going through the hell that is TSW. Forever thankful for ITSAN!
I'm so grateful that my friend shared the information about Itsan with me. There is a need to get word out about TSW and its groups like this one that will help spread the message of the potential dangers of topical Steriod usage.
ITSAN has helped a friend of mine going through TSW. She has spoken highly of this network, and the information you put out there is important. Thank you!
Itsan helped out a friend of mine :) I think it is great education as well for those who do not fully understand
ITSAN has helped me get through TSW and encourage me to be a strong person. I am truly thankful for the support ITSAN has given me
Finding this site has given me not just invaluable advice but pretty much the only advice available. It has helped me with the resources I need to explain my TSW to my GP and my dermatologist. In this medical blindspot Itsan shines a crucial light.
ITSAN has been such a huge support during my withdrawal from steroids. I used for over 40 years on and off. Im 20 months off steroid creams now and have a tiny rash behind my knees, not even worth talking about. Life is normal again. No more prescriptions every bloody month and making sure you have a,b,c creams before you live. No more steroids or bundles of moisturisers. No more feeling like you have ants eating you 24/7 head to toe, no more grey pallor, poor circulation, fatigue. Get a grip. If you're using steroids as long as I am and you have these symptoms, you know what I mean. Life is too short.
ITSAN has helped my daughter tremendously. She is a fighter and never gives up. When things get tough she only gets tougher.
I found out about Itsan in 2014 and it saved my life, and my skin is healing without steroids!! Thank you ITSAN! We will all heal, whether it's you that are going through this, a friend or a family member. We are here for eachother.
If it had not been for this organisation I would have been in a really bad way - I was overdosing on topical steroids and did not know it until I accidentally stumbled upon their website . It is a FANTASTIC NETWORK
ITSAN has helped me learn so much valuable information about the prolonged usage of Topical Steroids. I am so thankful to have found this site! It helped me figure out what was wrong with my skin. TSW/RSS whatever you want to call it....its really awful to go through, and knowledge is power! Wonderful website!
This website saved me. No one told me the dangers of steroids but I came across ITSAN one day and realized the horror of what was happening to my body. The withdrawal process has been ore bareable now that I know what has been happening is normal and I can also prepare for what is to come.
After I stopped using steroids I realised my skin took the same length of time to heal using natural products so will stick to natural remedies that dont thin my skin
This site is a literally a life saver for many people with much support and advice for a terrible condition brought on by pharmaceutical drugs. Deserves 10 stars.
ITSAN when I stumbled upon your site all my questions about steroids were confirmed, thank you for your invaluable, life changing insights and support!
Lisa
Melb, Australia
ITSAN is a wonderful site full of people who are supporting each other and sharing helpful information. The site has helped my wife greatly and I would highly recommend it.
I found itsan and realised I was not alone with my skin issues. I am 10 months in to tsw after using topical steroids all my life. It is the most difficult journey I have ever taken but knowing that others have walked the same road and come out the other side with the best skin of their lives gives me hope for the future.
They have helped a friend of mine and I know she couldn't be recovering as she is today without their support!
As a keratosis pilaris sufferer I have often used steroid creams to calm flares. I have never used it for more than the time prescribed but I can see why others would miss the memo or be so excited about results that they ignore. Organisations like this are vital to help those lost and in need. Good on you guys!
I've had eczema since I was a kid. I've used steroids since I was a kid. Over the years they have stopped working and made my rash worse. I've been at a loss trying to figure out what was wrong. Since finding this website I have found amazing knowledge that has helped me immensely. Thanks ITSAN :-)
I am now 27 months TSW and have much stronger skin than when I started. I no longer have allergic reactions in the fall or inflamed bags under my eyes, two things I had chronically through a lifetime on topical steroids. If you have RSS I recommend seeing someone to help manage dryness and infection - these are the two components of TSW that need the most attention and care. Without ITSAN, I would still be addicted to steroids.
Itsan helped a dear friend of mine! There needs to 've more information and people speaking up about this terrible, serious condition.
Itsan is a phenomenal organization. It has helped my friend and many others take control of their own health and restored their lives. Keep up the great work!
I was able to successfully confirm my child's condition using this website. Her health and happiness are a result of this information.
I have a friends and their children going through RSS right now after years and years of constant steroid use. Luckily, it was caught early. It reminds us that doctors are only knowledgeable about stuff they have studied and learned and what is current for them, may not be current.
Without ITSAN I would not know that it was the very steroid cream I was applying that was causing my greatly worsening 'eczema '. Without them I would still be in a very dark place instead of leading of normal life.
ITSAN is helped save my friends life. Thank you! They are a valuable resource to those suffering with TSW and for future education and awareness.
Itsan saved my 3years old sons life. Thank you. I will be grateful forever finding ITSAN and fund out about red slon syndrome
I accidentally stumbled on to this site after many years of the topical steroids I was given were failing to relieve my eczema. The stronger steroid the worsening of my condition. This site saved my life! The support, the encouragement, just overall family atmosphere in this group was overwhelming! If you or a loved one is suffering from this terrible, incurable condition this is the site that will change your life for the better. Steroids are poisonous period.
This organization helped my friend through a very difficult time with her son. Such an invaluable resource for people who suffer from Red Skin Syndrome.
The information given from this group group helped a friend that had given up on all hope. Thank you for helping her and her daughter find real answers and solutions.
ITSAN is doing great work for a severely underserved community. Their staff is entirely volunteer, and many of them are suffering themselves while working hard to get the word out about this terrible condition. These people are saints and deserve all the praise in the world.
Don't believe the one-star reviews. They are fake, all coming from the same person who has an axe to grind. It's too bad this web site allows one angry person to flood an organization with fake reviews and bring the entire rating down for everyone else. This web site should not allow that to happen.
Its an offers caring support for TSW. My grandson is well and happy now, and it's an supported their family all the way.
Keep up the great work! This is a little known cause, but so important for those who are affected. This organization had helped my friend and her daughter.
ITSAN is an amazing organization! They helped my friend through the harrowing ordeal of topical steroid addiction with her child. People need to know that this condition exists and that it is terrible! Drug companies that make steroid products want to sweep the suffering of these people under the rug so they can sell more products. We need ITSAN to bring awareness to the dangers of excessive topical steroid use.
I would have suffered a life riddled with steroids and continual questioning. ITSAN gave me the resources I needed to start my withdrawal.
This organization helped my friend's son when no one could figure out what was happening to him! Thank you!
This company is wonderful! It helped my friend out who had a son that went through steroid addiction.
So thankful for an organization that embodies the idea of allowing individuals to own their own medical experiences and who supports their efforts to find individual solutions that work. They have blessed the life of a dear friend of mine who was attempting to find answers for her son. Thank you.
My son suffered severe eczema and rebounds from steroids so bad he broke out into hives when we ran out of his Triamcinolone and had to be put on Prednisone with more Triamcinolone. So thankful for ITSAN and being out of that vicious cycle. 29 mns steroid free and my boy is stronger, healthier and growing!
Thank you for the good work that you do! You guys helped a dear friend of mine, without you guys they wouldn't have gotten the information they needed!
Watched as my dear friends son suffered through this. It would be wonderful for parents like her to have a place to go for support!
Information and support are powerful in times of distress. I know that steroids are addictive and I'm hoping more people can learn about this. ITSAN has been a beacon of information for our family. We need more of this.
ITSAN helped my little cousin get through a rough time. His skin is happy and healthy now. Thank you!!!
ITSAN was a godsend for my grandson. ITSAN helped my daughter to find information regarding her son's condition, which, unfortunately, few dermatologists are familiar with.
ITSAN's website specifically states that it does not provide medical advice, but only information. It has links to scholarly journals and testimonials, but leaves it to the user to decide how to use the information.
This organization was a huge help in helping one of my best friends treat her little girl. Until she found this page her daughter was miserable after coming across this page and it's invaluable information she was able to help her daughter who is now doing amazing!
My niece suffered from eczema since she was a baby. She was treated by several different doctors with medicines that contain steroids. It just continued to worsen as my sister-in-law kept searching for answers. She finally found ITSAN and with their help and support, my niece is finally almost completely healed and it is so nice to see pictures of her happy and healthy with clear skin!
This organization truly helped, even saved my friend and her son during the difficult days. So grateful there are organizations out there like yours.
ITSAN helped me to know what was going on with my daughter. We are 27 months steroid free and had a rough first 15 months. She has healed nicely and has beautiful skin now that is not dependent on steroids to keep it that way.
The information provided FOR FREE by ITSAN saved my daughter's life! When doctors scratched their heads and grasped at straws ITSAN had answers. They work so hard to share that information with doctors and patients.
Years of misdiagnosis and 15 months after finding ITSAN my daughter is healed. HEALED as in completely healthy and requiring no further treatment. Healed
Itsan has supported a dear friend of mine and her son. Great organization to work with. Top notch and first class!!
You were able to help my friend's son get through a very hard time. I hope you can continue to help others by spreading the word that you can give them some support.
This organization totally helped my best friend as her son battled Topical Steroid Addiction. I am so glad that he has finally overcome the nightmare that topical steroids caused. He is finally leading a normal life. GO ITSAN!!!!
This organization supported my friend through a dark time and now her son is happy and healthy. Thank you so much for all your help!
If you have a small child, Itsan will convince you that the only way for that child to heal is through suffering. No thanks, Itsan. My doctor says otherwise so I'll try a less painful solution.
I have gained great knowledge through ITSAN and my son's eczema was naturally healed without the use of steroids. I have witnessed people including friends who have been using steroids and their eczema keep coming back, worse each time. Why use steroids when we can be naturally healed from within and outside?
Words cannot describe how thankful I am to ITSAN. It gave me hope in the darkest moments in my life. It definitely deserve a 5 star or even more.
An organization whose primary goal is to encourage people to suffer and go against the advice of their doctors. This is lunacy and some people actually buy into it!
Thanks Grace and ITS an, for giving me the opportunity to heal naturally and confidently despite some challenges... You are awesome... Big big Hug!
From Dr. MS Teoh, Surgeon (3 years steroid -free) Yay!
I don't understand what Itsan is trying to accomplish. They pride themselves on suffering and in encouraging others to suffer. They don't believe in medicine and you'll be insulted if you do. A terrible organization.
Steroids only works temporary! If you are using it too often, it means u r hooked! Find out the real cause of your eZcema, suppressing it symptoms won't help!
ITSAN has not only helped folks in the States, but also in Asia, and it is because of ITSAN that our Singapore-based support group was founded, where we learned about the effects of steroids on our skin and organs. Through ITSAN, thousands of lives and marriages and families have been saved. Thank you, ITSAN, and every volunteer who has selflessly given of your time and life, towards educating the world about topical steroids and what it does to eczema folks like us. We are MORE than grateful for you!
I had taken my son to several immunology specialists and allergists trying to figure out why my son couldn't go longer than 2-3 days without strong steroids before flaring. Once I found itsan, I realized exactly why that was -- my son was addicted to steroids. The itsan site is a wealth of information on both what to expect and how to get medical help from medical doctors.
ITSAN is such a wonderful organization. They held the key to helping our Doctor understand what was going on with our child when we were faced with the unknowns of Red Skin Syndrome. With our Doctor's research and info he found through ITSAN, Dr Rapaport and others who had paved the way before us, he held our hand with guidance and care as we all watched our child heal! ITSAN is an amazing community of individuals who have realized that they, and many others on this planet, can not tolerate the use of steroids at all and have horrific side effects from them - some, after even very small uses. These 1 star reviews that are trying to discredit and bog down these pages are very telling. They have an agenda to push their quick pharmaceutical "cure" with a Doctor who uses massive amounts of steroids and antibiotics. There are too many people now in the ITSAN groups and forums that have HEALED - totally and beautifully - without steroids! Please see through the spam of the 1 star reviews on this site - they are from the same community who stalk the ITSAN forum and FB groups trying to convince those (who have had these horrific reactions to steroids) that they are somehow wrong for trying to get away from what has caused them so much pain and suffering in the first place.
ITSAN is amazing and I am SO eternally grateful to them! Keep doing what you are doing! You are saving skin!!
ITSAN was a lifeline. I would have never known what was going on with my son had it not been for this charity. They provide information and support. The information, I discussed with my doctors. They all supported the process of topical steroid withdrawal, as all other treatments had been exhausted and were producing side effects -- in addition to Red Skin Syndrome. The support, I depended on. Red Skin Syndrome is a debilitating condition. It is not chronic. But in the acute phase, support from others who have come out the other side is vital. It is a shame that the December 14-15th 1 star reviews were written by people who have never utilized ITSAN for support, but are instead wishing to sell their product. If stopping steroids improves the condition in 12 months time, and using steroids for 3 years straight did nothing but cause full-body burning/shedding/weeping skin, which would you choose? Thank God for ITSAN! My son's skin no longer burns, sheds, cracks, and/or weeps. He is healthy and well, and now all of his doctors are aware of Red Skin Syndrome and the damage topical steroids can cause for some unfortunate users.
ITSAN literally saved my life. I would give it 100 stars if I could. I was suffering from a major immune disorder that I thought was an incurable, unknown disease. No doctor or dermatologist knew what was causing it and they just kept giving me more and more steroids (injections, creams, pills) which only made things worse. ITSAN showed me that steroid addiction is real and gave me resources and support. I am now much better but still recovering now 10 months after stopping all steroids.
There are not enough stars to rate this nonprofit as high as it deservs. They raise awareness that completely changes lives. They are also very professional. I suffered very mild periodical atopic eczema as a child and it was in no way life debilitating. Steroid induced eczema took over in my 20s and I suffered worse and worse conditions after rounds of stronger prescriptions of corticosteroids. The reason steroid induced eczema continues to be mistaken for natural eczema is due to the increadibly long and painful withdrawal process from the drug, which reverting back to the drug appears to offer great releif from (in the short term).
I am almost 3 years in #tsw #rss. I am also still suffering Itsan,org made my sufferig easier....although a living hell..Itsan.org really helped so I could see others and relate to those going thru the same thing.
Melissa James
ITSAN saved my life. I would still be dependent on steroid creams if i hadn't discovered their website. I used their website as my main source for advice and inspiration. ITSAN has inspired so many, including myself, to start or join online communities that provide the most crucial support an individual needs during this rough time. I have no doubt that the ITSAN community is going to continue grow for the next decade or two. Steroid creams are poison!
ITSAN changed my life. I couldn't be more grateful for finding this wonderful website. Thank you so much.
When I hit the brick wall on searching for some answers about my skin, i apparently stumbled upon ITSAN website. ITSAN totally understand what I am going through / what i have gone through all these years. Every statement was spot on and it made me realized that dependence on steroids just really make a whole lot of sense. I am going through TSW right now, and I wouldnt be strong enough to have to live this choice if not for ITSAN and all the supportive groups I'm in.
I can't even begin to express how grateful I am to ITSAN. I researched for years trying to figure out what was wrong with me, then happened upon their website one day. Everything just clicked all of a sudden when I read about TSA/W. It was an "AHA" moment for me and I often go back to the website when I have questions and need more answers. It has literally been a lifesaver for me!
My son was only a toddler when he was suffering from RSS. I took him to COUNTLESS doctors, including many specialists that we traveled have way around the country to see, and after way too many tests, pokes, prods, endoscopies, skin biopsies on my poor baby, not one single doctor could explain what was happening. The only thing they could do was prescribe more steroids, stronger steroids, which made it worse. When I stumbled across ITSAN at 4am after being up all night googling and reading article after article in medical journals, I couldn't believe that my exceedingly rare son had the same thing being described on the itsan site, to the T! Our lives from there on out was changed forever. At over 2 years with zero steroids, my son's skin looks better than ever. He's healthier than he's ever been, and it's all thanks to ITSAN. They explain the facts, provide an extensive amount of medical research publications, and provide excellent support. A true God-send.
ITSAN deserves every credit it rightfully earns, and more! It gave hope to my son, to have a normal future not plagued by infantile eczema which turned into a nightmare of Red Skin Syndrome through prescribed topical steroid applications. A ruined childhood, adolescence, and young adulthood, for being an “excellent” patient, is too high a price to pay.
ITSAN is bringing awareness to the potential harm of topical steroids to many thousands, and hopefully will prevent what my son sent through.
Thank you, ITSAN!
I had been using topical steroids for many years to deal with inflammation in a very private area.
Topical steroids work. However, when you stop using them, strange rashes begin to appear and your skin doesn't feel like itself anymore. This is what happened to me and I had no idea what I was going through. All I know was that something was wrong and when I'd go to see a doctor about it, they'd want to give me another prescription for a stronger steroid. I knew better and was convinced that continued use would only make my situation worse. ITSAN walked me through the withdrawal process and described in perfect detail the symptoms I was experiencing. ITSAN consoles and informs with warmth and clarity. They provide a forum for better understanding, healing and recovery. My thoughts.
Thanks to ITSAN I am now aware of what caused me so much pain and suffering in the past. I was about to throw in the towel, my thought were suicidal, as I had tried EVERYTHING and my eczema just got worse over the years. THANK YOU ITSAN, you gave me hope and you gave me my life back!
I first found ITSAN when my eczema was unusually spreading and bright red. The information on the website really helped me understand what i was going through and what steroids were doing to my body. I use the forum every day to chat to people who are going through topical steroid withdrawal and when i am feeling down and sore, everyone on the forum helps me through it. To know other people are going through it to and being able to check if your symptom is normal. I am very grateful to ITSAN, thank you
Review from Guidestar
ITSAN has without a doubt saved my life. If i didn't discover this God sent organization i would still be poisoning my body with those horrible steroids. I can't say enough about the members and others who are so helpful and give so many sufferers hope and a future. I thank ITSAN from the bottom of my heart for giving me a future without steroids, and for letting us all know there is a cure!!
If it had not been for ITSAN, I would have NEVER discovered the truth - that topical steroid creams are pure poison! I had 1 tiny, dime-sized spot of nummular eczema and, thanks to steroid creams, it spread all over my entire body within a matter of months! The dermatologists just continued to wag their heads and dole out more toxic creams and steroid shots, to no avail. Thank God I found info about ITSAN on Youtube one day!! Their information and moral support have been invaluable to me and I hope they succeed in waking up many sufferers, as well as dermatologists.
This is an awesome, wonderful organization!!!
I'm 51 and have had eczema since I was 3 1/2 months old. I was given cortisone shots until I was 12 years old! I've been on topical steroids or pedrnisone since. ITSAN.org saved my life!I use a cane or walker-I'm sure it's a side effect of steroids. I'm at my 8th day of withdrawal and it's just plain awful. I have cold shivers, hot and sweaty all at the same time. My skin itches 24/7, am red all over and my skin is flaking a lot. I see the light at the end of the tunnel thanks to itsan!
I didn't think ITSAN would help my serious eczema in anyway. I was wrong. I've been dealing with severe eczema throughout my life and couldn't find a cure, until I found ITSAN.
Not only does ITSAN provide me with great emotional support, and I have also benefited from members' unique experiences. I am still battling my eczema, but through ITSAN I have found several methods to relieve my symptoms. The members give me great hope that I will eventually heal.
I would be lost without this website. Everytime I get a new symptom of TSW, someone there has already been through it. There is always somewhere on the forum there to answer questions. I feel so in control with ITSAN behind me, without it I don't know if I would have had the resolve to go through the withdrawal process.
I found this website when I was trying to find answers to why I was having chronic skin problems (that were completely new to me) after using topical steroids for five months--as prescribed by a dermatologist. This is a wonderful website full of important information and tremendous support from people who are caring and knowledgeable. From what I can see, with very little money, they do a tremendous amount. This organization is well worth supporting in any way you can!
I can't begin to express my enormous relief in discovering this website and realizing I will have normal skin one day. I had no idea TSA existed. I'm always in pain. Imagine paper cuts all over your hands. That's what I feel on a good day. The bad days are filled with intense unscratchable itching, blisters, fissures, elephant skin, deformed nails, crying and shame. I was on TS for 55 years; since I was an infant. Having just kicked the addiction 3 weeks ago, I'm at the beginning of withdrawal. I itch, I have edema, I developed new sore spots. Thank God for ITSAN to walk me through this ordeal. I will never use steroids again, not ever. THANK YOU!!
the change in our granddaughter's life is almost miraculous. many thanks to ITSAN for the support they gave to her parents in overcoming the "hell" they were all going through.
Review from Guidestar
ITSAN and it's tireless volunteers has touched and changed the lives of so many. Thank you for bringing to the forefront an issue that so desperately needs to be addressed. Thank you for the education and support that you provide. Thank you for guiding so many on the road to recovery.
Review from Guidestar
I went through a cycle of topical steroid withdrawal without knowing what it was at the time. I was terrified, because I went through hell without knowing why and how long etc. My doctor rebuked me for staying in the sun too long (i.e. he was obviously unaware of what was going on). I was also unable to explain to people what was going on with me. They looked at me as if I was an attention seeker. When I read the information on this website, I got the greatest relief, because the mystery of my suffering was finally solved. To say that I am grateful to the creators of this website, does not do them justice. I am very, very, very, very ....... thankful to them.
I wish I had found ITSAN earlier because then I wouldn't have gone through the pain I went through. During my most dreadful and doubtful days, ITSAN gave me the courage to finally give up on steroids and made me see that my eczema might be actually caused by steroids instead. During my worst flares, I wanted to give up and just take the prednisone which my derm had prescribed because my skin was constantly oozy and crusty and I did not sleep much during those few months but having seen so many people in ITSAN going through and making it in the end, I pushed on and finally made it through myself as well. I wouldn't say that I am cured 100% but at least I am cured 99% with occasional very very very mild flares. Since then, I have been warning others about the excessive use of steroids and showing them ITSAN so they will have a better understanding.
ITSAN really deserves more than 5 stars, as the organization to our family means more than I could every write here. Because of ITSAN, its board members and an entire community of fellow sufferers, we received answers where the medical industry and more than 30 doctors in three extended hospital stays failed us. Because of ITSAN, we could breathe again and we have watched life come back into our son. Without this wonderful organization. we would still be sinking in the unknown and may have even lost our precious son, as he was in renal failure last year because of the spiral of his health due to the use of topical steroids. WE LOVE ITSAN! This network of wonderful people have been an answer to prayer in our lives!
Review from Guidestar
This is a great online resource for spreading awareness of tsw. As a person suffering from tsw I am so happy I stumble upon the ITSAN community because it gave me hope on my recovery. I have a much brighter outlook on my life and hope that ITSAN continues to grow and help others who suffer as well.
Review from Guidestar
Our son has struggle with eczema his whole life - we have gone from steroid cream to steroid cream, without any improvements. Since finding ITSAN we have hope that he can recover. There is plenty of support for those going through Topical Steroid Withdrawal. We hope they continue with their important work so we can prevent others going through the same hell as my son.
Review from Guidestar
ITSAN is how I found a cure for my daughters out of control eczema. It has been a constant source of information and support. I do not know how I would have got through this without ITSAN
Review from Guidestar
This organization has saved many of us who have uncontrollable eczema caused by topical steroids, the cream used to treat eczema itself. It is amazing, full of support through this tough journey to become healthy and have normal skin again. I can't thank itsan enough for being here, literally changing our lives.
My daughter has struggled with an ever worsening eczema for several years. We have been to many doctors and found no answers. I was lead to the ITSAN and for the first time found an answer to her awful condition. Not only did they have the facts about topical steroid withdrawal, they also had a support network in place, which is exactly what we needed. This organization has been a life-changing one for us and we are so thankful for their commitment to people suffering with TSW.
Review from Guidestar
ITSAN has provided valuable information on topical steroid withdrawal. I had no idea such symptoms exist until I personally experienced it. At the time, I was horrified with the condition and medical doctor cannot provide any help. I was under tremendous distress. This condition had almost turned my life to halt. With the great forum and support group, I am now able to face it and accept it. Unlike other forums which tend to sell products, it is well managed and I find genuine comments and no spam. A safe environment to share and to find reliable information.
Amazing website and forum. Helped me immensely throughout my withdrawal from topical steroid cream use for eczema
Review from Guidestar
I am so grateful to Itsan for the information and support they provide. It has a major impact on a life-changing journey and process I am now going through. Without them I would still be in the dark about my condition and no closer to actually healing.
Review from Guidestar
Topical Steroid Addiction is something that not enough people know about, and ITSAN is the only organization that I know of the provides support to those who suffer from it and educates the public about this condition. I have a dear family member who suffered for years because her skin was addicted to topical steroids. Through ITSAN, she got the support she needed to go through the withdrawal process and get on the road to healthy skin that feels good and looks good.
Review from Guidestar
Only organisation informing about and supporting those with topical steroid addiction.
Review from Guidestar
What a wonderful program, giving children who are suffering achance to be hhealthy and normal.
Review from Guidestar
My son was on topical steroids until I came across ITSAN. It was a vicious cycle of using the steroid, the eczema clearing up, a few days later it coming back with a vengeance, and then going back to using the steroids again. After reading information from ITSAN, we stopped using the topical steroid. My son went through withdrawal symptoms, but after a few months, he's much better than he was when using the steroids! We are on the path to recovery!!
Comments ( 1 )
ITSAN 03/15/2016 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.