FOURTH QUARTER 2022 NEWSLETTER
Dear TSW Community,
We hope that during this holiday season you are finding moments to appreciate how far you have come and to connect with friends and family who love and support you. Topical Steroid Withdrawal Syndrome affects potentially millions of individuals, caregivers and families. No one should suffer the devastating effects of this condition. In this newsletter, we highlight ways to connect with others going through TSW Syndrome, a call for TSW Syndrome research and steps to advocate for change together.
Currently, significant barriers to accessing an accurate TSW Syndrome diagnosis and supportive care affect the physical and mental health of TSW sufferers who reach out to ITSAN from over 50 countries. TSW Syndrome research is critical. This year, ITSAN has been building a TSW Syndrome Patient Registry designed by researchers, medical experts and patients, to establish prevalence, advance research, develop a diagnostic profile and improve patient care. It is imperative that further research be conducted to better understand the prevalence and mechanisms of TSW. Those suffering with TSW deserve a better, safer, and shorter recovery, monitored by supportive and knowledgeable doctors, and your support could be pivotal.
Thank you to those who have helped us fundraise for this important project by donating to ITSAN’s GoFundMe and through our PayPal Giving Fund. If you have not yet donated, we are still in dire need, and your support will allow us to expand our research, advocacy and patient support in 2023. We appreciate every donation to help us fight to end TSW Syndrome. Please donate to ITSAN here. Thank you!
TSW SYNDROME RESEARCH IS CRITICAL
A recently published article in the British Journal of Dermatology, “Topical corticosteroid withdrawal syndrome: the patient community call for high-quality research, clear definitions and diagnostic criteria” amplifies the urgent need for TSW Syndrome research, and includes ITSAN as a recommended resource for research support.
“Topical corticosteroid withdrawal syndrome (TSWS), sometimes called ‘steroid addiction’ is of increasing interest to the eczema community. The period from 2016 to 2021 saw a 274% increase in mentions of TSWS on social media platforms. It is challenging to provide a clear description of TSWS as the concept is currently ill-defined, but a UK drug safety update has recognized distinct withdrawal reactions if higher-potency TCS are stopped after prolonged or continual use, noting erythroderma/redness and burning worse than the original condition.”
Five key points were summarized for the clinical and research community:
- High-quality research is needed.
- Clear definitions and diagnosis criteria are a priority.
- Prevention will require understanding of the complex conditions that result in TSWS.
- Research can raise awareness and acceptance of TSWS within the medical community.
- Research needs to be conducted with the TSWS patient community.
Howells, et al. “Topical corticosteroid withdrawal syndrome: the patient community call for high-quality research, clear definitions and diagnostic criteria.” British Journal of Dermatology, November 4, 2022.
Read the full article here.
SUPPORT ITSAN’S RESEARCH AND ADVOCACY WORK
Donate to ITSAN’s GoFundMe here.
By supporting ITSAN, you are fighting with us for safer topical steroid guidelines, patient safety and TSW Syndrome prevention.
- Represented the TSW Syndrome community at medical and legislative conferences.
- Published on TSW Syndrome in the medical literature.
- Expanded support to TSW sufferers and caregivers through monthly support groups.
- Provided information and patient and caregiver support on ITSAN’s website: ITSAN.org
- Responded to hundreds of TSW sufferers and their loved ones worldwide, providing resources for patients and caregivers.
- Started building a TSW Syndrome Patient Registry to establish prevalence and advance research on TSW Syndrome.
Each project requires funding, and we have never had these kinds of costs before. Your giving will help us continue to exist to end TSW Syndrome. Help us make a difference. Launch your own fundraiser for ITSAN and share it with family and friends!
To create a GoFundMe for ITSAN go to gofundme.com, select “For Charities” and enter “ITSAN.” Please reach out to us by email at firstname.lastname@example.org with any questions. Thank you!
Special thanks to those who recently started fundraisers for ITSAN including Giselle and Harry!
Giselle: 30-Day Outdoor Swim Challenge: December 2022 – January 2023
“I’m doing a 30-day outdoor swim challenge to help raise money for ITSAN, and I will try to document as much as I can…ITSAN is helping to support those in TSW and people who care about those in TSW as well. Please share if you like and/or donate. I will be grateful for either. Much love.”
Learn about Giselle’s 30-day swim challenge to fundraise for ITSAN here.
Donate to ITSAN here.
Harry: Half Marathon Run – February 2023
“Although I run for me, I run for a bigger cause. I run because I must, because this condition won’t beat me, I run thinking about everyone going through this…I’m running a half marathon in February in support of ITSAN (a nonprofit charity close to my heart). Hopefully we can raise awareness and provide support for those who need it.”
Learn about Harry’s GoFundMe for ITSAN here.
HEALTH CANADA – SAFETY BRIEF ON TOPICAL CORTICOSTEROIDS
In 2022, Health Canada released a safety brief on “topical corticosteroids and the risk of topical withdrawal reactions” with safety reminders for healthcare professionals.
“Recently, the United Kingdom’s Medicines and Healthcare products Regulatory Agency (MHRA) conducted a review of TCS withdrawal reactions. The majority of cases reviewed by the MHRA were associated with the use of moderate to high potency TCS. However, the MHRA review also included cases of TCS withdrawal reactions associated with the lower potency TCS, hydrocortisone, and ultra-high potency TCS, as well as cases in children…Children and infants may be more susceptible to systemic adverse effects of TCS due to proportionally greater absorption because of an immature skin barrier and a greater surface area to body weight ratio compared to adults…Health Canada will continue to monitor safety information involving TCS withdrawal reactions to identify and assess potential harms.” -Health Canada
Read more here.
We are encouraged to see regulatory agencies throughout the world taking Topical Steroid Withdrawal Syndrome seriously and warning the public. In 2021, ITSAN met with the FDA in the United States to advocate for safer topical steroid labeling, dosing, patient monitoring and TSW Syndrome prevention.
RAISE YOUR VOICE – HELP KEEP PATIENTS SAFE
Sign ITSAN’s petition for safer, more accurate labeling of topical steroids here.
Lack of clear guidelines on labels continues to put patients at risk of developing Topical Steroid Withdrawal Syndrome. Currently, much needed usage and dosing information about topical steroids is absent or confusing, including:
- No maximum dose
- No definition of a “large area” of the body
- No definition of a “long period of time” for usage
- No details of defining break times
- No reference to potency or class
- No unit of measurement (guidelines do not match by country)
Find steps you can take to raise TSW Syndrome awareness here.
Sign ITSAN’s petition for safer, more accurate labeling of topical steroids here.
TSW SUPPORT – FIND ONLINE GROUPS WORLDWIDE
ITSAN’s private online support group has 16,000 members and provides resources, awareness and sharing of experiences. ITSAN does not diagnose or recommend treatment or medication. ITSAN encourages TSW sufferers to work with a supportive medical provider.
Learn about over 30 different TSW support groups, listed by topic and location, including ITSAN’s online support group here.
Please note: ITSAN’s Topical Steroid Withdrawal Syndrome Private Facebook Support Group is run and moderated by ITSAN Board members. ITSAN does not vet other TSW support groups listed on ITSAN.org and ITSAN claims no affiliation.
JOIN ITSAN FOR A TSW WARRIOR AND CAREGIVER SUPPORT GROUP
Join us for a virtual support group!
WEDNESDAY, JANUARY 11
2:00pm-3:00pm MT/4:00pm-5:00 ET/9:00pm-10:00pm GMT
The support group will be facilitated by ITSAN Board members. ITSAN’s Board is made up of individuals who have either gone through TSW or who have a child who has experienced TSW. We welcome all TSW warriors and caregivers to join at your comfort level. Please note that ITSAN does not diagnose or recommend treatment or medication. ITSAN recommends that individuals going through TSW Syndrome work with a supportive medical provider.
Register in advance for this meeting here. After registering, you will receive a confirmation email containing information about joining the meeting.
THANK YOU ITSAN SPONSORS
ITSAN has 3 amazing sponsors! The generous giving of our sponsors allows us to do the important work of our mission – raising awareness of TSW and supporting all affected individuals. If you would like to become a sponsor, or know someone who would, please email or pass on our contact information – email@example.com
THANK YOU! A heartfelt thank you to all of our donors whose generosity has allowed us to do this important work. No one should go through this debilitating condition alone or without proper medical support.
Remember in the US, you can donate with every AMAZON purchase on AmazonSmile. Choose International Topical Steroid Awareness Network as your charity.
Many employers will also match funds, which ITSAN qualifies for using Tax ID 45-4556484 and address P.O. Box 303, Dacula, GA 30019. For more information email firstname.lastname@example.org
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