Welcome to the ITSAN Fall Newsletter. Our community has grown significantly over the last 12 months; we count over 7500 people currently.
ITSAN’s mission of the International Topical Steroid Awareness Network is to raise awareness of Topical Steroid Withdrawal Syndrome and support affected individuals. ITSAN is the only 501(c)(3) non-profit charity serving the global TSW Syndrome community as a resource for the individual, the caregiver, and the healthcare provider.
Notice anything new on the ITSAN website? Kathryn Tullos, RN has been spearheading the effort to update research links, add a News section, and additional functionality into the site, which is getting around 11k visitors a month. To learn a little more about the ITSAN board working behind the scenes for the TSWS community, please visit the About ITSAN tab on ITSAN.org. And if ITSAN has helped you, please consider writing a review at Great Nonprofits so we stay Top Rated for 2020.
Thank you for completing our Q1 Survey! ITSAN put out a survey in February to the community to better understand what you want and need from us. We had around 100 people participate in this quick survey, and many of you want to hear more healing stories, more personal experience, and more medical information. Check.
ITSAN Working for Change – – Recall that last fall, ITSAN was one of five patient advocacy groups for the first Patient-Focused Drug Development meeting with the FDA about eczema treatments; many of those in the general TSW community came out in full support of the experience and burden of living with a condition for which current drug therapies have fallen short for. The survey received over 1500 survey responses from 58 countries around the world. The report from this meeting and the survey were recently published; the report is called More Than Skin Deep and the full report is available for your perusal. Just want the quick recap? This is for you!
That report led to an alignment of missions with the AAN, the Allergy and Asthma Network, on a survey being constructed that will promote a safety meeting with the FDA, and also inform AAN’s current Steroid Stewardship campaign. The AAN warns against the overuse of OCS (oral corticosteroids; think Prednisone) so we have a lot in common. Kelly Barta and Kathryn Tullos, RN are our champions on this cause. Kathy is representing ITSAN in two related efforts: 1) Steroid Stewardship Patient workgroup. 2) Steroid Stewardship Healthcare Providers Workgroup.
ITSAN was invited to speak at the Dermatology Nurses Association annual conference in March; thanks to a global pandemic, this meeting was postponed until August 2020 and will be virtual. Kathryn Tullos, RN is slated to speak on behalf of ITSAN. Jodie Ohr was able to represent ITSAN and present on the TSW Syndrome experience to the North Carolina Dermatology Nurses Association in February, just before things got a bit crazy around the world. The group was very engaged and had many questions about the condition and how to avoid it. Her presentation is available for you to customize for your own advocacy efforts as well; contact firstname.lastname@example.org if you think you want to present to your own local industry contacts or authorities.
Parent of a child who has experienced TSW and caregiver advocate, Jolene MacDonald created the following roadmap on strategies for families experiencing the stress of identifying and establishing appropriate care for their child during TSW.
Supporting and Protecting Your Family and Your Right to Access Appropriate Medical Care For Your Child During Topical Steroid Withdrawal Syndrome
ITSAN encourages anyone going through Topical Steroid Withdrawal Syndrome or caring for someone in TSW to work with a TSWS supportive doctor in order to access appropriate care. ITSAN does not diagnose or recommend treatment or medication. ITSAN maintains a list of TSWS (Topical Steroid Withdrawal Syndrome) supportive doctors recommended by members. If you are looking for a place to start, check the list in the Files section of the Facebook group: ITSAN Topical Steroid Withdrawal Syndrome Support Group – Private Group
Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as “supportive” by members of ITSAN support groups. This usually means supporting your wishes to use a ‘no steroid’ approach, and does not always mean they are familiar with TSWS (Topical Steroid Withdrawal Syndrome). You may want to confirm their perspective on TSWS before booking an appointment.
As a caregiver advocate and parent to a child who is now six years TSW, before I was able to establish care with a TSWS supportive doctor, I created my own roadmap to protect my child and my choice not to pursue a treatment (topical steroid creams), that had worsened his condition. I knew of other parents of children who had experienced extreme, iatrogenic reactions to topical steroid cream treatment and had shared their experiences with the risk and stressors involved in advocating for their child’s care. The suggestions below are from my experience of what my family did while my son went through TSWS. This roadmap highlights ways to be proactive in advocating for your child and family during Topical Steroid Withdrawal Syndrome.
ITSAN does not diagnose or recommend treatment or medication.
For our family being prepared as a parent caregiver during TSW meant:
Bringing a family member to medical appointments as a note taker for medical accountability until we established care with a supportive and trusted pediatrician/provider.
Accessing copies of all of my child’s medical records.
Correcting inaccuracies in his hospital records and former pediatrician’s medical records.
Keeping photo documentation of his TSWS journey, including when his symptoms were worsened by treatment. Labeling the treatment, class, dose and duration.
Printing the drug information for every topical, oral and inhaled steroid he had previously been prescribed and highlighting every adverse reaction he had experienced and ADDING the ones not listed.
Establishing care with a pediatrician who included steroid allergy in my child’s medical records.
Reaching out to an attorney friend who contacted a colleague with previous experience working for Child Protective Services to discuss family and patient rights.
Establishing care with a naturopathic doctor to coordinate lab work and guide us in ways to treat the underlying cause of his condition.
Screening dermatologists by phone to determine if they had alternative treatment options besides topical steroid creams and calling more than once to confirm before seeing an out of state dermatologist.
Continuing care with an osteopathic doctor for craniosacral therapy in addition to our primary care physician.
Continuing care with a Licensed Clinical Professional Counselor for individual therapy.
Documenting every provider my child had seen, including upcoming appointments.
Printing resources on TSWS to have available to share and to keep in a binder with my child’s medical information. Info at: ITSAN.org
I hope that the suggestions above help give you ideas of ways to feel more prepared and proactive when you are caring for your child’s intense health issues during TSWS. There are supportive doctors who will listen and learn if they are not familiar with TSWS. I was able to share my concerns with providers who understood my child’s condition and their skill and support was healing for all of us. Stay hopeful and take time to take care of you.
To Report Adverse Drug Reactions:
File a MedWatch voluntary report with the United States FDA here.
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:
And if everyone reports their adverse effects to the manufacturer as well, our voices will be amplified and harder to ignore.
For more information on reporting adverse drug reactions to topical steroid creams and/or other medications to the FDA, please see our April 2020 step-by-step Webinar on how to report to the FDA with ITSAN President, Kathy Tullos, RN. It is the pinned post in the ITSAN support group on Facebook. It will be posted on our ITSAN YouTube channel soon as well.
Be an Advocate:
TSW makes advocates out of all of us since the condition is not yet well known. The most impactful thing you can do to advocate for change is to complete an Adverse Drug Reaction Report with the FDA, even if you’re not from the United States.
We need your recommendations! Please email your TSWS supportive healthcare provider’s full contact info (name, address, phone) and how they helped to: Info@itsan.org
The Creative Side
From Our Community. Jessica Myrup of Blaque Cloud Art has dealt with skin issues since she was 5 years old and sums up her experience in prose:
There is fire in my skin
It is happening again.
The flame licks nerves,
To claws that bite;
Who split in spite;
To douse the need
Until I bleed.
There is fire in my flesh.
The wounds now raw and fresh.
It burns, it churns,
For peace, it yearns,
Now weeping with the rest.
Sometimes I feel
I only heal
To feed its appetite
Though mourning’s real,
My nerves of steel
Show me morning’s light
Help support ITSAN
Make a tax-deductible donation to ITSAN and help support our ongoing efforts to raise awareness about TSW Syndrome.