Second Quarter 2021 News
In this issue we will highlight advocacy work happening worldwide and the potential for local, national and global TSWS awareness to bring accurate diagnosis, early detection, proper treatment and ultimately prevention. Raising awareness of Topical Steroid Withdrawal Syndrome to support affected individuals, caregivers and healthcare providers is ITSAN’s mission.
In May ITSAN hosted the Spark Virtual Patient Conference with over 250 registrants representing 20 countries! Sessions focused on TSW advocacy, integrative treatments, mental health support, mindfulness and TSW success stories. Breakout sessions brought together TSW caregivers, men and women experiencing TSW and a special cartooning session for TSW warrior kids and their siblings.
Watch the full conference here. (Breakout sessions were not recorded to protect the privacy of attendees)
Thank you to those who donated towards the Spark Conference! With your support and a Member Impact Fund grant from The International Alliance of Dermatology Patient Organizations (IADPO), we were able to upgrade our Zoom and cloud storage and hire a tech expert to help us reach over 20 countries. The conference funds raised did not cover all of the above expenses so if you are able to donate – thank you!
We need donations in order to operate. Please donate via ITSAN’s PayPal Giving Fund.
We will continue fundraising for projects coming up including updating ITSAN’s website and an educational brochure for patients to share with their doctors. Every small donation adds up to support ITSAN’s mission to raise awareness of Topical Steroid Withdrawal Syndrome and support affected individuals. Thank you to our donors past, present and future!
During the Spark conference attendees were asked the following poll questions. Results reflect the critical need for supportive medical and mental health care during Topical Steroid Withdrawal Syndrome.
When patients and medical providers advocate together:
“I burst into tears and told her I actually think that is what’s happened to me too. This was Manchester UK tonight at 7pm. Word is getting out guys and it’s given me the strength to continue. Not sure how but I have to keep on fighting.”
-Joely Persse, 4 months TSW. Read more.
ITSAN Working for Change
Presenting for the Dermatology Nurses’ Association – April 2021
Kathryn Tullos and ITSAN Treasurer Jodie Ohr presented on “Raising Awareness of Topical Steroid Withdrawal Syndrome: Patient Impact and Caregiver Responsibility” at the Dermatology Nurses’ Association Virtual Convention on April 21, 2021. It was attended by nearly 100 nursing professionals representing dermatology clinics across the US – Registered Nurses, Advanced Practice Nurses and Nurse Practitioners. We received excellent feedback and were asked engaging questions. They were really interested to learn more and be better able to help TSWS patients. A great event and victory for TSW Syndrome awareness! Learn more here.
Steroid Stewardship Survey Project
ITSAN President Kathryn Tullos & Board Member Kelly Barta are working with Allergy & Asthma Network (AAN) on a collaboration project for steroid stewardship, including our joint survey conducted last Fall. Thank you all who completed the survey! A preliminary report of results has been completed. We have been in contact with 3 doctors who are excited to team up with us and publish the findings in a scholarly journal. They believe the survey results have enough information to publish 5 or 6 papers! This is great news for raising awareness within the medical community. The initial paper would focus on the over-exposure of Atopic Dermatitis/Eczema patients to steroids of all types: topical, oral, injected, inhaled, nasal sprays, eye drops and ear drops. Our goal is that this will lead to more appropriate prescribing and monitoring practices of steroids of all kinds – especially when they are prescribed at the same time.
“Advocating for Change” webinar:
In June, ITSAN Board Members, Jodie Ohr and Kelly Barta hosted a webinar as a follow-up to their presentation on advocacy at ITSAN’s conference in May. They presented in more detail on how you can get involved to make a difference not only for yourself, but also for the countless others who are either facing TSW or need to be aware that it exists so that it can be prevented. Learn more here.
TSWS in the News & Community
“Chase is planning a fun field day event to raise money and awareness for ITSAN…Kids Boost is a nonprofit organization designed to empower kids to give back to the world by using their gifts, talents and passions.” -KidsBoost
“Why I want to raise money for ITSAN…the reason I chose ITSAN is because they help people with skin conditions like I had.” – Chase, 12 years old . Learn more about Chase’s inspirational story and his amazing fundraiser here.
Dr. Heba Khaled and translators who have helped make the comprehensive video “A TSW Overview,” accessible in French.
Shout out to ITSAN Co-Founder and former President, Kelly Parker Palace on the launch of her book, “Take Your Mark, Lead! 10 Ways to Lead Yourself and Others Like a Champion.” Kelly’s book is available on Amazon and she will share a portion of the proceeds with ITSAN. Please select International Topical Steroid Awareness Network as your favorite charity on Amazon Smile (U.S. only).
*Worth Remembering* “Your story and your experience can not only change your local community it can change your state, your province, your country, it can eventually change the world if you are willing to show up.” – – ITSAN’s Spark Conference – Kelly Barta on Advocacy.
“A lot of times people say, why don’t my doctors know about this? Why isn’t change happening? How come we’re not getting the support that we need? And a lot of times, it’s good to take a step back and realize that there are certain steps that have to take place before your doctor is actually going to be aware of Topical Steroid Withdrawal — before they’re willing to treat it. Just because if they’ve been educated differently, if they don’t see any scientific data to back it up, it’s very hard for them to just change that mindset.
So as we work together with ITSAN, we get a lot of questions and we just kind of wanted to highlight what are some of the steps that have to take place for this tide to change. And for everyone to acknowledge this as a household word, not just the general public, but physicians as well so that we’re getting the support that we need and so that this doesn’t keep on happening. Obviously the steps here are general awareness. So if you’re talking to your friends and family, we need to be talking to our doctors and the general public. But we also need to get data to support all of the anecdotal stories that we’re bringing to the table.
So a lot of times people can say, well that’s just an anomaly or that’s just you, or maybe that’s just worsening eczema you don’t know what you’re talking about. It’s so important to have that scientific data which is one of the reasons it’s so important to be involved in research and surveys. But then we also need to get a diagnostic code so that doctors can actually diagnose this and send these things to insurance companies so people can get covered by their insurance. That’s super important – a diagnostic code. But just like what Dr. Sheary was saying we still don’t even have the criteria completely defined yet, so these are all steps that we’re working toward.
Once we get that code, then people can actually be diagnosed and they can be covered. We need a public health advisory to physicians and to patients issued by FDA, our regulating agency and other regulating agencies around the world, so that physicians are aware of it and people are aware of it. We need the product label changes on the steroids themselves so that when people are looking at it they can realize, okay you know this isn’t right, it says to use 2-4 weeks but yet I’m being prescribed this for 10, 20, 50 years and there’s no warnings on it. If the warnings are there, if there are better guidelines on it we can actually show our doctors, okay this isn’t correct and they can go and reference it as well. But because it is so ambiguous there’s a real problem there. And then obviously physician education…for the whole system to change it’s going to take a little while but all of these things play a part in that, so that’s what we wanted to talk about today. How can you get involved and start making that change?”
-Kelly Barta, ITSAN Board Member & State Advocacy, Special Project Manager at Allergy & Asthma Network, and President of the Coalition of Skin Diseases
`Highlighting ‘Scratch That’ UK’s Advocacy Work
Are you a TSW sufferer in the UK? Scratch That UK, a community and awareness campaign for Topical Steroid Withdrawal Syndrome is rallying TSW sufferers in the UK to report adverse effects of topical steroids to the MHRA (Medicines and Healthcare products Regulatory Agency). Every Yellow Card submitted to the MHRA has helped make a difference. Read more from Scratch That “UK!
It’s a busy time for Scratch That! We have had a response from the Medicines and Healthcare products Regulatory Agency (MHRA) recognising skin reactions from the use of topical steroids. MHRA are considering whether to make changes to the wording on patient information leaflets of steroid products. They will then work with experts and patient representatives to communicate these changes to healthcare professionals through national Drug Safety Updates. There is still a long way to go in terms of full recognition of the reality of this condition but these steps are critical.
We have also provided a letter template for people to use to write to their Member of Parliament (MP) to ask for recognition of TSW by the government and the NHS and calling for research into the condition with a view to change the way that topical steroids are prescribed and monitored during use and withdrawal.
We recently met with the Eczema Care Online (ECO) team, made up of researchers at Nottingham University. They heard from members of the TSW community about our concerns around topical steroids being considered ‘safe’ and have agreed that research into the condition is needed. Scratch That will continue to engage with ECO researchers to advocate for safe use of topical steroids in eczema.
We continue to work towards getting our voices heard and making change. We know it will be a long road but we believe we are starting to be included in the conversation about topical steroids.”
Some Top TSW Tips from Scratch That UK:
- Ice packs!
- Keep mobile as much as possible
- Tell friends and family about what you are going through
- Look after your mental health with positivity, mindfulness and counseling
- Fake nails or keep them short and filed
- Try to connect to people in the community on a personal basis if possible, rather than taking in every bit of advice out there
An important way YOU can help is by reporting adverse effects and side effects to steroids to the FDA (Food and Drug Administration). You can report to the FDA from anywhere in the world. If outside the US, please also report to your country’s equivalent to the FDA. Report to the FDA here. If you are in the UK submit a Yellow Card report here.
For more about Scratch That UK, including a guide to writing your Member of Parliament: www.scratchthat.org.uk
You Are an Activist
TSW makes advocates out of all of us since the condition is not yet well known. Here are some ways you can help:
Complete an Adverse Drug Reaction Report with the FDA: You can report adverse drug reactions or side effects to the FDA from anywhere in the world. But if outside the US, please also report to your country’s equivalent to the FDA (Food and Drug Administration). The more places you report, the more your experience will be seen and heard. Report adverse effects here.
Share Your Voice: If ITSAN has helped you, please consider writing a review at Great Nonprofits so we stay Top Rated for 2021.
Share Your Story: Thank you to every TSW warrior and caregiver for the courage to share your story and pictures, to raise awareness on the difference between TSWS and eczema, to promote prevention, early detection, accurate diagnosis & proper treatment. Every story has the power to bring change. Share your story with us: firstname.lastname@example.org
Thank you to our Sponsors! Please consider supporting them. 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
And 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. Without your support, we could not have grown and taken giant leaps in building bridges with the medical community. Together we can raise awareness and prevent this condition for others in the future. Please donate on our website or through our PayPal Giving Fund. 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 help contact Jodie Ohr at firstname.lastname@example.org.
Hang in there!