Were you diagnosed with eczema or some form of dermatitis?
MEDICAL AND SCIENTIFIC RESEARCH
There are hundreds of studies and articles documenting TSA and TSW Syndrome. Find a selection of salient articles from the scientific literature.
TSW IN THE NEWS
The voices of TSW warriors and caregivers are at the forefront of raising awareness of Topical Steroid Withdrawal Syndrome. Find news stories about TSW warriors, caregivers and stakeholders with the power to make a difference worldwide.
ADVOCATE
Learn how YOU can help end TSW, including how to report topical steroid side effects to the FDA.
FOR PATIENTS
Find resources including:
- Speaking with your doctor
- Connecting with others
- Mental health support
FOR PARENT CAREGIVERS
Find resources including:
- Speaking with your child’s doctor
- Connect with others
- Tips for taking care of yourself and your family
FOR CAREGIVERS – PARTNERS
Find resources including:
- Supporting your partner’s mental and physical health
- Connect with others
- Tips for taking care of yourself and your family
Medical and Scientific Research
There are hundreds of studies and articles documenting Topical Steroid Addiction and Topical Steroid Withdrawal Syndrome. Below are a selection of some of the most salient articles that provide a good introduction to the scientific literature.
“Topical Steroid Addiction in Atopic Dermatitis”
Mototsugu Fukaya MD, et al. Drug, Healthcare and Patient Safety, 2014;6: pp.131–138.
View Details
Full text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4207549/
Response to questions posed by the National Eczema Association (NEA): “Here, we describe the clinical features of topical steroid addiction or red burning skin syndrome, based on the treatment of many cases of the illness. Because there have been few articles in the medical literature regarding this illness, the description in this article will be of some benefit to better understand the illness and to spur discussion regarding topical steroid addiction or red burning skin syndrome.”
Key points:
“As the NEA expressed the end points of its research as some interrogative sentences on its website, the authors also will try to describe the illness by answering those questions.”
- How do you define steroid addiction?
- What are the clinical findings of steroid addiction?
- What do the skin lesions look like, and how are they different from eczema?
- Where on the body does it usually occur?
- What strength of steroid and usage pattern leads to steroid addiction?
- How is steroid addiction treated?
- How common is steroid addiction syndrome?
Other resources from Dr. Fukaya:
- “Improvement of Atopic Dermatitis After Discontinuation of Topical Corticosteroid Treatment.” Mototsugu Fukaya, MD. Archives of Dermatology. 2000;136(5):679-680. Abstract” http://archderm.jamanetwork.com/article.aspx?articleid=190182
RSS risk factors underestimated: “Topical corticosteroids are a useful form of treatment for atopic dermatitis. However, patients are likely to be addicted after long-term treatment. This paradoxical phenomenon has so far been underestimated, and improvement following the temporary rebound flare after discontinuation of corticosteroid therapy has been entirely ignored.”
- “Change of housing environment and withdrawal of corticosteroid as treatments of atopic dermatitis.” Mototsugu Fukaya, MD. Arerugi. 1999 May;48(5):520-5. Abstract: http://www.ncbi.nlm.nih.gov/pubmed/10390899
- English translation of Dr. Fukays’s online book – “Atopy Steroid Addiction in Japan.” Full Text: http://topicalsteroidaddiction.weebly.com
“Prevalence of atopic diseases and the use of topical corticosteroids. Is there any connection?”
AN Pampura, MD, Medical Hypotheses, 2005;64(3):575-8.
View Details
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/15617870Atopic diseases on the rise in developed countries: “The prevalence of atopic diseases (atopic dermatitis, bronchial asthma, allergic rhinitis) has considerably increased for the last 40 years. This tendency has coincided with the beginning of the epoch of the use of the topical corticosteroids, which have a potent immunomodulation action.”
Key points:
- Use of topical corticosteroids in children of early age contributes to the increase of prevalence of atopic diseases in developed countries.
- Lower prevalence of atopic diseases in rural areas and in children from families with the anthroposophic lifestyle.
- Increased level of atopic diseases among people with higher socioeconomic level and in children from 1 child families.
- Corticosteroid use in developing countries is limited due to economic reasons and active use of complementary medicine.
- If the proposed hypothesis is correct, a revision of the therapeutic approach is necessary concerning the attitude toward application of topical corticosteroids in children suffering from various forms of eczema.
“A systematic review of topical corticosteroid withdrawal (“steroid addiction”) in patients with atopic dermatitis and other dermatoses”
The National Eczema Association Task Force: Tamar Hajar MD, Yael A. Leshem MD, Jon Hanifin MD, Susan T. Nedorost MD, Peter Lio MD, Amy S. Paller MD, Julie Block BA, Eric L. Simpson MD, Journal of the American Academy of Dermatology, 2015 March, 72(3), pp. 541-549.
View Details
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/25592622
When to consider RSS rather than a typical “flare-up”: “Burning and stinging are the most frequently reported symptoms with erythema [redness] being the most common sign. Signs and symptoms occur days to weeks after topical corticosteroid (TCS) discontinuation. More data are needed regarding the frequency and duration of use that predisposes to this condition. Further, there are no data regarding the prevalence of this condition. It is also unclear whether children are actually less likely to develop this disorder or that cases of TCS withdrawal in the pediatric population are underreported. . . . Extrapolating from our review, a clinician should favor TCS withdrawal over a flareup of the underlying atopic dermatitis if the following features are present: (1) burning is the prominent symptom, (2) confluent erythema occurs within days to weeks of TCS discontinuation, and (3) a history of frequent, prolonged TCS use on the face or genital region.”
Key points:
- Although many of the side effects of TCS are addressed in guidelines, TCS addiction is not.
- Burning and stinging were the most frequently reported symptoms with erythema [redness of the skin] being the most common sign.
- TCS withdrawal syndrome can be divided into papulopustular and erythematoedematous subtypes, with the latter presenting with more burning and edema.
- TCS withdrawal is likely a distinct clinical adverse effect of TCS. Patients and providers should be aware of its clinical presentation and risk factors.
“Steroid Addiction.”
Albert M. Kligman, M.D., Ph.D. and Peter J. Frosch, M.D. International Journal of Dermatology. Vol 18, Jan-Feb 1979, pp 23-31.
View Details
Abstract: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-4362.1979.tb01905.x/abstract
Typical presentation of RSS: ” [Topical steroid] Treatment continues optimistically for some weeks or months. Then, deliberately or accidentally (went on vacation without drug, forgot to refill) the skin receives no drug. Promptly, within a day or two, the treated areas become reddened, tender, itchy, cracked, scaling, and erupting into pustules, especially on the face. The original disease may exacerbate, but the key event is the rebound dermatitis which is exceedingly uncomfortable and distressing. The patient rushes to reapply the steroid and secures immediate relief. The itching, dryness, and scaling quickly abate. All is well until the next lapse when rebound dermatitis returns with greater intensity than before. The patient becomes “hooked” in order to prevent the misery producing rebound flare. But, after many months, other atrocious things are happening. . . . At this stage, stopping the steroids leads to a ferocious rebound within one or two days with fissuring, exudation, pustulation (of the face) and always with intolerable discomfort. The patient is now solidly addicted and cannot escape unless fortune furnishes a physician who recognizes the situation and specifies the one treatment the patient fears — withdrawal from the steroid (or starts the weaning process by substituting a weaker steroid).”
Key points:
- Etiology and presentation of topical steroid addiction
- Proper diagnosis is imperative to receiving proper treatment
- Prevalence is underreported so steroid addiction is not well characterized
“Corticosteroid Addiction and Withdrawal in the Atopic: The Red Burning Skin Syndrome.”
Marvin J. Rapaport, MD and Mark Lebwohl, MD. Clinics in Dermatology. Volume 21, Issue 3, May–June 2003, pp. 201–214
View Details
Abstract: http://www.sciencedirect.com/science/article/pii/S0738081X02003656
RSS is caused by “corticosteroid addiction”: “This paper expands our previous observations to include patients with similar syndromes localized in other body areas.These conditions similarly resolved upon discontinuation of corticosteroids, suggesting that a significant proportion of these syndromes are attributable to chronic corticosteroid usage and “corticosteroid addiction.” The medical literature pertaining to these syndromes usually has implicated sun exposure, occult allergens, or psychosomatic reactions as the cause of ongoing skin eruptions. We consider “corticosteroid addiction” of the skin to be the pertinent etiologic factor in the majority of these patients.”
Key points:
- Typical presentation – “Withdrawal symptoms, manifested by angry erythema and burning, were long-lasting and severe.”
- Addiction patterns – “All of these patients had been treated with long-term topical corticosteroids, usually with escalating dosage and frequency of application. In the majority of patients, the initial symptom of pruritus commonly evolved into a characteristic, severe burning sensation. In many cases, systemic corticosteroids had also been administered to relieve the severe erythema and burning, but this only exacerbated the condition.”
- Withdrawal patterns – “The pattern of corticosteroid withdrawal was usually quite characteristic. Seven to 10 days after corticosteroids were stopped, an initial flare of erythema occurred at the site of the original dermatitis, accompanied by local spread and marked burning. This flare lasted anywhere from 7 to 14 days and culminated with exfoliation.”
- Time frames for recovery – “This pattern of flare and quiescence repeated itself but each time with flares of shorter duration and more prolonged quiescent periods. Edema, burning, and erythema decreased with each episode of flare.” “The time required for corticosteroid withdrawal mirrored the time over which they had originally been applied, and was often protracted.”
- Mechanism for how steroid addiction occurs is not understood – “Possible mechanisms might involve an effect on the “skin immune system,” a direct effect on blood vessels in the skin or effects on the pituitary-adrenal axis.”
Other resources from Dr. Rapaport:
- “The red skin syndromes: corticosteroid addiction and withdrawal.”
Marvin J Rapaport, MD and Vicki Rapaport, MD. Expert Review of Dermatology. August 2006, Vol. 1, No. 4, pp. 547-561.
Abstract: http://informahealthcare.com/doi/abs/10.1586/17469872.1.4.547
Full text: http://www.rapdermbh.com/PDFs/red-skin.pdf
- “Eyelid dermatitis to red face syndrome to cure: clinical experience in 100 cases.”
Marvin J. Rapaport MD, Vicki H. Rapaport MD. J Am Acad Dermatol. 1999 Sep;41(3 Pt 1):435-42.
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/10459119
Full Text: http://www.rapdermbh.com/clinic/press/eyelid-dermatitis/
- “Serum Nitric Oxide Levels in “Red” Patients: Separating Corticosteroid-Addicted Patients From Those With Chronic Eczema”
Marvin J. Rapaport, MD; Vicki H. Rapaport, MD. Archives of Dermatology. 2004;140(8):1013-1014.
Full text: http://archderm.jamanetwork.com/article.aspx?articleid=480695
- FOX 11 News Feature Story: Dr. Rapaport on Red Skin Syndrome
“Topical corticosteroid addiction may be to blame when ‘rash’ defies treatment”
Paula Moyer, Dermatology Times, 1 October 2012.
View Details
Full text: http://dermatologytimes.modernmedicine.com
RSS is different from eczema: “When examining the patient, look at the erythematous lesions. They will have a different appearance from classic eczema. Atopic dermatitis typically has excoriated, lichenified lesions in the antecubital and popliteal areas. In contrast, patients with steroid-induced dermatitis have distant pruritic papules, nummular wet lesions and general skin vasodilation.”
Key points:
- Rather than an elusive allergen that defies treatment, the problem may be the treatment itself
- Pain medication, sleep aids, anti-anxiety medication and antihistamines can temporarily ameliorate the itch until the withdrawal reaction subsides
- Several months may pass before the flares subside
“Topical Corticosteroid-induced Rosacea-like Dermatitis: a clinical study of 110 cases”
Sanjay K Rathi MD and Leishiwon Kumrah MD, Indian Journal of Dermatology, Venereology, and Leprology, 2011,Volume 77, Issue 1, pp 42-46.
View Details
Full Text: http://www.ncbi.nlm.nih.gov/pubmed/21220878
Use of topical steroids can cause dermatitis with no previous underlying skin disease: “A total of 110 patients were enrolled for the study over a period of 2 years, excluding all those with the known disease entity in which topical steroids were commonly used. . . . The duration of topical steroid use ranged from 4 months to 20 years. The most common clinical presentation was diffuse erythema (redness) of the face. Most of the patients had rebound phenomenon on discontinuation of the steroid.”
- Varied clinical presentations are seen with prolonged and continuous use of topical steroids.
- The most common topical steroid used was Betamethasone valerate, which could be due to its easy availability and low cost.
- The treatment of this dermatitis is difficult, requiring complete cessation of the offending steroid, usually done in a tapering fashion.
Additional articles
View More
- “Facing up to withdrawal from topical steroids” Mary C. Smith, RN, MSN; Susan Nedorost, MD; and Brandie Tackett, MD, Nursing, September 2007, vol 37, issue 9, pp 60-61.
- “Topical corticosteroid abuse on the face: a prospective, multicenter study of dermatology outpatients.” Saraswat A, Lahiri K, Chatterjee M, Barua S, Coondoo A, Mittal A, Panda S, Rajagopalan M, Sharma R, Abraham A, Verma SB, Srinivas CR. Indian Journal of Dermatology, Venereology, and Leprology. 2011 Mar-Apr;77(2):160-6.
- “Steroid-induced rosacea-like dermatitis: case report and review of the literature.” Chen AY, Zirwas MJ. Cutis. 2009 Apr;83(4):198-204.
- “Steroid dermatitis resembling rosacea: aetiopathogenesis and treatment.” Ljubojeviae S1, Basta-Juzbasiae A, Lipozenèiae J. Journal of the European Academy of Dermatology and Venereology. 2002 Mar;16(2):121-6.
- “Topical Corticosteroid Addiction and Phobia.” Aparajita Ghosh, Sujata Sengupta, Arijit Coondoo, and Amlan Kusum Jana. Indian Journal of Dermatology. 2014 Sep-Oct; 59(5): 465–468.
- “Side-effects of topical steroids: A long overdue revisit” Arijit Coondoo, Meghana Phiske, Shyam Verma, and Koushik Lahiri. Indian Dermatology Online Journal. 2014 Oct-Dec; 5(4): 416–425. (this has a long section about rebound phenomenon and steroid addiction)
TSW in the News
The voices of TSW warriors and caregivers are at the forefront of raising awareness of Topical Steroid Withdrawal Syndrome. Find news stories about TSW warriors, caregivers and stakeholders with the power to make a difference worldwide.
MAY 2022

What is topical steroid withdrawal?
May 16, 2022
(Image credit: The Washington Post)

What It’s Like to Live With Topical Steroid Withdrawal
May 10, 2022
(Image credit: Allure)

Megan – ‘Topical steroid withdrawal after treating eczema left me feeling worthless’
May 14, 2022
(Image credit: ok.co.uk)
APRIL 2022

April 30, 2022
(Image credit: Glamour.co.uk)

April 29, 2022
(Image credit: DailyMail.com)

Aramide and Bethany – “Steroid cream: Women send our warning after severe reactions”
April 12, 2022
(Image credit: BBC News)

Christopher – “Man in agony after misdiagnosed eczema says water feels like acid on his skin”
April 7, 2022
(Image credit: METRO.co.uk)
MARCH 2022

March 18, 2022
(Image credit: Consumer Reports)

Chi – I Became Addicted to My Eczema Treatment
Mar 8, 2022
(Image credit: Chi Villines)

Ruth – “Steroid cream withdrawal was agony but my GP laughed it off”
Mar 8, 2022
(Image credit: express.co.uk)
FEBRUARY 2022

Feb 27, 2022
(Image credit: dailymail.com.uk)

The documentary “My Life During Topical Steroid Withdrawal” was released worldwide. Watch here.
Feb 25, 2022
(Image credit: CutFocus Production Company)

Feb 21, 2022
(Image credit: DailyMail.com)

Sofia – ‘Steroid creams left my skin as thick as an elephant and gave me months of insomnia’
Feb 18, 2022
(Image credit: Mirror.co.uk)

Feb 16, 2022
(Image credit: The U.S. Sun)

Feb 2, 2022
(Image credit: MyLondon.com)
JANUARY 2022

Skin on Fire – The new short documentary “Skin on Fire” was released on YouTube. Watch Skin on Fire here.
Jan 25, 2022
(Image credit: PCH Films)

Sofia – ‘I quit skin cream after 20 years and now I feel like I’m crawling with insects’
Jan 21, 2022
(Image credit: Mirror.co.uk)

Jan 8, 2022
(Image credit: DailyMail.co.uk)
DECEMBER 2021

Brian – “TSW Journey: A Topical Steroid Withdrawal Journey” was released on YouTube.
Dec 2021
(Image credit: YouTube)
NOVEMBER 2021

Brittany – “Woman suffering steroid cream withdrawal had ‘oozing’ skin with water like ‘acid’”
Nov 21, 2021
(Image credit: Mirror.co.uk)

Nov 18, 2021
(Image credit: DailyMail.com)

Andrea – Andrea’s TSW video was released on Tyla and has reached 1.7 million people.
Nov 12, 2021
(Image credit: Tyla)

“‘Fairness mania’ is fueling a dangerous drug dependency in India”
“‘Fairness mania-induced use of topical steroids’ is a silent epidemic of ‘astronomical magnitude,’ says Dr. Koushik Lahiri.”
Nov 2021
(Image credit: CNN.com)
Dr. Lahiri serves on ITSAN’s Medical Advisory Board.
OCTOBER 2021

Lyndsie – “Woman, 26, left smelling like ‘old pennies’ after her skin gets hooked to cream”
Oct 23, 2021
(Image credit: Mirror.co.uk)

Ariane – “Woman ‘not contagious’ despite agonising ‘yellow crust’ that erupted across her face”
Oct 27, 2021
(Image credit: Mirror.co.uk)

Oct 1, 2021
Image credit: DailyMail.com
SEPTEMBER 2021

Scarlet – “Schoolgirl loses sight in eye after using anti-inflammatory creams for eczema”
Sept 23, 2021
(Image credit: metro.co.uk)
Scarlet’s story was also covered in Sept 2021 by Yahoo!sport here and The Mirror here.

This press release from GOV.UK reports steps towards TSW Syndrome awareness and prevention happening in the United Kingdom with the help of MHRA, @scratchthat.uk, TSW activists and topical steroid adverse effect reporters!
“Product information for topical corticosteroids is being updated to include safety warnings on withdrawal reactions. We have developed a patient safety leaflet to support patients and health care professionals, which includes advice on how to reduce the risk of severe reactions.” -Medicines and Healthcare products Regulatory Agency (MHRA)
Sept 15, 2021
(Image credit: GOV.UK)

Boaz & Savannah – Toddler develops ‘steroid addiction’ after having treatment for eczema
Sept 14, 2021
(Image credit: Metro.co.uk)

Sept 14, 2021
(Image credit: DailyMail.com)
JULY 2021

Jul 10, 2021
(Image credit: Women’s Health)
JUNE 2021

Jun 30, 2021
(Image credit: DailyMail.com)

Jun 2, 2021
(Image credit: DailyMail.com)
MAY 2021

May 30, 2021
(Image credit: TheSun.com)
MARCH 2021

Topical steroid addiction: Patients call for more support
Mar 17, 2021
(Image credit: BBC Wales News)
Watch the 3 minute broadcast on BBC Wales News here.
JANUARY 2021

Jan 28, 2021
(Image credit: DailyMail.co.uk)
JANUARY 2020

Jan 31, 2020, inews.co.uk
(Image credit: Louise King)
NOVEMBER 2019

Nov 5, 2019
(Image credit: DailyMail.co.uk)
JANUARY 2019

Jan 21, 2019
(Image credit: DailyMail.co.uk)
APRIL 2017

Chase and Michelle – “Five-year-old boy’s topical steroid addiction made him so ill his only respite was NINE-HOUR baths”
Apr 24, 2017
(Image credit: mirror.co.uk)
DECEMBER 2016

Nov 2016
(Image credit: Daily Mail)
JANUARY 2016

Jan 23, 2016
(Image credit: DailyMail.com)
ADVOCATE
“What do you need to advocate for change? First and foremost you need a willingness to get involved and you need confidence that the cause you have is worth fighting for…anybody can do this.” -Kelly Barta, ITSAN Executive Board member and Past President
Take Action! – Report to the FDA: Advocate for the safety of others.
Have you reported your adverse side effects from Topical Steroids to the FDA? Now is the time.
You can report adverse drug reactions or side effects to the FDA (The United States Food and Drug Administration) from anywhere in the world. If outside the US, please also report to your country’s equivalent to the FDA. Use the term “TSW” or “TSW Syndrome” when you report to the FDA. Report here.
ITSAN has met with the FDA to discuss the need for safer topical steroid cream labeling, dosing, prescribing and patient monitoring guidelines. We need reports to help bring change.
If you have not yet reported because you are busy, overwhelmed or triggered by having to revisit any part of your TSW experience, know that we are with you and your report will help END TSW. We see you. We hear you. The world will see and hear you too.
Medical providers can also report patient adverse effects during and/or after stopping topical steroid creams to the FDA. Report here.
ITSAN Webinar – Report to the FDA
For more information on how to report to the FDA watch as ITSAN President Kathryn Tullos guides viewers through the steps to take action and to be heard. (See each step at 24:00).
Report to the FDA From Around the World
You can report to the FDA from anywhere in the world and if outside the US, please also report to your country’s equivalent to the FDA. For example, in the UK you can also report to the Medicines and Healthcare products Regulatory Agency (MHRA) here.
Use the term “TSW” or “TSW Syndrome” when you report to the FDA.
ITSAN Webinar Advocating for Change
In June 2021, ITSAN Board Members, Jodie Ohr and Kelly Barta hosted a webinar as a follow-up to their presentation on advocacy at ITSAN’s Spark Virtual conference. They discuss how you can get involved to make a difference not only for yourself, but also for countless others who are either facing TSW or need to be aware that it exists so that it can be prevented. Watch as they share their experiences with advocacy and introduce ITSAN’s Advocacy Kit.
Find topics of interest from “Advocating for Change” including:
The Why – Why is advocating important to you? The power of your story.
Kelly’s Why – Enough is Enough (1:42)
Jodie’s Why – Protecting Others (5:45)
Sharing Prevalence and Proof (9:05) – What we are asking for and what we want. Data points to pull into your story when talking to your state representatives and industry representatives.
What is an Advocate? (12:14) – Standing up and doing something for ourselves and on behalf of others.
Steps to Make Change (16:09) – Understanding how to effect change.
Advocacy Toolkit (18:13) – How you can help and go at the pace that works for you.
Report to the FDA (30:40) – Report to the FDA: Advocate for the safety of others. You can report adverse drug reactions or side effects to the FDA (The United States Food and Drug Administration) from anywhere in the world. If outside the US, please also report to your country’s equivalent to the FDA. Use the term “TSW” or “TSW Syndrome” when you report to the FDA. Report here.
Grassroots Advocacy (31:09) – taking it one step at a time, finding your strength, visualizing the task. Informing your elected official so they can carry the torch of awareness forward. Grow your connections and keep opening doors.
Identify the Stakeholders (39:02) – Medical, Academic, Legislative, Regulatory, Industry, Research. Reach out on the local and state level to find ways to bring change.
Getting Started in Grassroots (43:06) – what are my next steps?
Tips (55:01) – what to do and what to bring as you advocate

Image of Kelly Barta speaking to Georgia’s Senate Health Committee.
“Advocacy started me on a journey and that is really what this is about. It’s not, ‘Hey guys, let’s do a webinar and learn 5 steps of reaching out to your legislator today.’ This is a journey for all of us and I think it’s self-realization. It’s also changing our world view…getting involved to make a difference.” -Kelly Barta, ITSAN Executive Board member and Past President
Share your story.
Sharing your story can help prevent TSW and offer hope to others. Connect with ITSAN – share your story here.
“You have a powerful story and there are thousands if not millions of people who need you to speak up…believe me, I’ve gone through my periods of fury, about what happened to me, all of the loss in my life, the loss in other peoples’ lives, but if that’s all you bring to the table, that doesn’t get very far…you have to be able to channel that in a way that’s productive and when you start seeing the change happening, it is so rewarding. Because it’s not just for you, it’s for countless people. You are changing the world.”
-Kelly Barta, ITSAN Executive Board Member and Past President
Share medical research with your doctor
These resources on TSW Syndrome may be helpful for you to share with your doctor:

Press release from GOV.UK on steps towards TSW Syndrome awareness and prevention happening in the UK (Sep 2021)

National Eczema Society and British Association of Dermatologists joint position statement on Topical Steroid Withdrawal Syndrome (Jan 2021)

National Eczema Association (US) article, “TSW: What the Eczema Community Needs to Know Now” (Mar 2021)

ITSAN website https://www.itsan.org/for-doctors/ – works cited at end of page.

BBC Wales TSW article, “Topical steroid addiction: Patients call for more support” (Mar 2021) (Mar 2021)

“What Every NP Should Know About TSW” by ITSAN President Kathryn Tullos, RN, published in NP Student Magazine. (Oct 2021)
Write to Your Doctor
Speaking up about your TSW experience is a way to help prevent TSW Syndrome. Here are steps to write to your doctor:
1. Gather a few of your TSW photos (3-5).
2. Write down your doctors’ names, office emails addresses, and physical addresses all in one place. Send the letter to the doctor’s practice rather than to a specific person.
3. Access a template “Letter to Your Doctor” in ITSAN’s Advocacy Kit located in the Files section of ITSAN’s Private Facebook Support Group here. Another great template from Scratch That UK an online information resource, community and awareness campaign” for TSW is their “Guide to Writing to Your MP About TSW” here.
Edit either letter to reflect your story – your own voice, details, pictures, etc. The templates are simply starting points to get going. The doctor’s letter template is written in an unemotional tone so as to not be off-putting – it will get them to hear you and consider your message.
4. Mail it off AND send via email if you can. Email can easily be forwarded to other physicians. Mail will get it into their hands and keep it on their desks to revisit. Send both if you can, but send at least one.
“I remember the singular moment I became an activist. I’m downstairs, everyone else is sleeping peacefully and I’m furiously just itching, itching, scratching, scratching, this is in the early days so it was a couple of hours literally every single night when I was experiencing this and everyone else in the world was completely oblivious and I thought you know what, my doctor, doctors, have no idea what has been created in me and they don’t care because I haven’t cared enough to tell them, so how can I expect them to quit doing this to other patients if they don’t know that it’s actually happened. That’s when I realized there is no one else, it’s got to be us. We are the ones that can make a difference.” -Jodie Ohr, ITSAN Executive Board member
FOR PATIENTS
Find resources including:
- Speaking with your doctor
- Connecting with others
- Mental health support
More Content Coming Soon!
ITSAN Brochure
Download this ITSAN brochure to learn more about TSWS.
Member Recommended TSWS Supportive Doctor List
IMPORTANT: Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as “supportive” by members of the ITSAN community. This usually means supporting your wishes to use a ‘no steroid’ approach; they are not necessarily likely to be familiar with TSWS (Topical Steroid Withdrawal Syndrome). Please consider confirming their perspective on TSWS before booking an appointment.
Important Tips for TSW Friends and Family
Have you ever searched for an easy way to explain TSW to your friends and family members?
Here is an easy print-out that can help.
Videos
FOR PARENT CAREGIVERS
Find resources including:
- Speaking with your child’s doctor
- Connect with others
- Tips for taking care of yourself and your family
More Content Coming Soon!
ITSAN Brochure
Download this ITSAN brochure to learn more about TSWS.
Member Recommended TSWS Supportive Doctor List
IMPORTANT: Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as “supportive” by members of the ITSAN community. This usually means supporting your wishes to use a ‘no steroid’ approach; they are not necessarily likely to be familiar with TSWS (Topical Steroid Withdrawal Syndrome). Please consider confirming their perspective on TSWS before booking an appointment.
Important Tips for TSW Friends and Family
Have you ever searched for an easy way to explain TSW to your friends and family members?
Here is an easy print-out that can help.
Videos
FOR CAREGIVERS – PARTNERS
Find resources including:
- Supporting your partner’s mental and physical health
- Connect with others
- Tips for taking care of yourself and your family
More Content Coming Soon!
ITSAN Brochure
Download this ITSAN brochure to learn more about TSWS.
Member Recommended TSWS Supportive Doctor List
IMPORTANT: Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as “supportive” by members of the ITSAN community. This usually means supporting your wishes to use a ‘no steroid’ approach; they are not necessarily likely to be familiar with TSWS (Topical Steroid Withdrawal Syndrome). Please consider confirming their perspective on TSWS before booking an appointment.
Important Tips for TSW Friends and Family
Have you ever searched for an easy way to explain TSW to your friends and family members?
Here is an easy print-out that can help.
Videos
TSW Checklist
If you answer yes to many or all of these questions, we encourage you to explore ITSAN.org and discuss TSW with your doctor. Click here for the informational ITSAN Brochure to print out and share with your physician and others who need information about this disease.
Support ITSAN
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