Eczema Expo 2021: Panelist Perspective
Wow, wow, wow.
The National Eczema Association's "Eczema Expo 2021" is officially over. I just closed down the Zoom (since it was remote this year), and I am trying to soak in all that was discussed this weekend.
The NEA really did an excellent job with their team of doctors, especially Dr. Peter Lio and Dr. Eric Simpson. But, the biggest milestone, in my eyes, is the acknowledgment of topical steroid withdrawal.
If you told me five years ago that I would get to sit on a panel at the NEA Expo to speak about TSW, I wouldn't have believed you.
Back then, not even the NEA acknowledged our suffering. I remember feeling vulnerable to backlashes from doctors, alone and afraid that most of us would have to do this on our own. Whispers of TSW would pop up, but never a direct acknowledgment was made. It was like we were the homeless section, and if no one made eye contact with us, it felt okay to pass us by.
Your voice counts
I, like many others, continued to persevere and use our voices regardless of setbacks and alienation from top eczema associations. It wasn't easy, but together, we never let up. Because of that tenacity and that stubborn fight to be seen, we were finally heard.
Sessions dedicated to TSW
Funny enough, this year's Eczema Expo theme was, "Can You Hear Me?" - an echoing sentiment the TSW community ardently shared.
However, this was the first year they allowed not one, but two, different sessions that spoke on the topic of topical steroid withdrawal. The first session was with Dr. Peter Lio, an incredibly humble and caring dermatologist, and Kathy Tullos, our fearless leader of ITSAN (and a registered nurse). This was more of a foundational session with PowerPoint slides, alongside Kathy's anecdotal tale of how her son became a topical steroid withdrawal victim.
A panel of TSW warriors
The second panel was more of a Q and A regarding what to do after TSW is seen to be the issue - and I got to be a speaker! I was absolutely stoked to be on the panel.
Along with myself, Kathy came back to moderate the session. Then, we had Linette, another TSW warrior, Jolene, an ITSAN member, and Dr. Simpson, another doctor we can now add to the "TSW-friendly" list. His voice meant so much during our panel.
Do I have TSW?
First, I think the biggest question most people had was, "Do I have TSW?" It is such a hard question. We answered as best as we all could. Most of the tell-tale signs are:
- Eczema popping up in unusual areas/areas it never used to pop up
- Being reliant on topical steroids as a consistent maintenance tool
- The need for more potent steroids because the less potent ones no longer work
However, we did preface that our panel was not about doling out medical care. We had science to back us up with much of our discussion. However, we were just sharing our own experiences.
Not all doctors take TSW seriously
Second, it is legitimately exhausting and sometimes scary trying to find a supportive doctor. Kathy and I were floored in a previous session where even the world-renowned, Dr. Peter Lio, stated that doctors have often rolled their eyes at him while he presented TSW research.
"If Dr. Lio gets eye rolls," Kathy declared, huffing with slight humor, "what are we supposed to do?" Exactly!
Tips for the appointment
And yet, we must forge on. Just as with eczema, it is not safe to go without medical support or care. Despite the anxiety and fear when facing a new doctor, we offered some advice on ways to make the appointment as painless (and successful) as possible. Here are some tips.
- Bring documentation - your history, photos, charts you've kept on symptoms, etc.
- Prepare your opening speech - it sounds silly, but knowing what you are going to say can help ease some of the stress.
- What to say in your speech - We know we may encounter a doctor who is less than kind or accepting when it comes to TSW or "negative" steroid talk, but appeal to their civilian side. Let them know that, even though they may not be knowledgeable on this subject or even agree with the literature on its existence, but that this journey is tough to ride out all alone, and having a supportive doctor who can offer different avenues than just steroids would be a real lifesaver for you.
- Options, options, options - There are ALWAYS more options than just steroids. Ask them to expound on other non-steroidal creams available or new biologics. Furthermore, ask them if they know any other doctors they would recommend for other routes such as patch testing, or TCM (Traditional Chinese Medicine), or perhaps emotional therapies that could help lessen your anxiety. You can even investigate if you have vitamin deficiencies or a bacterial/fungal overgrowth.
- What is your goal? - Maybe your skin is not the only thing bothering you. If you can express you'd like help in certain areas like sleep or itch, perhaps that could help bring you both closer to a common goal.
Finding the right doctor
Even with all of this, remember: your gut knows best. If the doctor speaks AT you, rather than WITH you, then maybe they aren't the best fit. Consider it to be like dating. Don't stay in a relationship that isn't supporting you or making you feel heard. Ditch that doctor and try again. It is exhausting (believe me, I know), but it's such a relief when you find one who is willing to take you on and listen as a teammate.
It's a partnership
Know you are worthy of incredible care. Never settle for less. The NEA team made it very clear this year that doctors and patients should be partners. Other words that described that doctor/patient relationship included "shared-decision making," "team talk," and "working together." Dr. Simpson was a perfect example of that during our session.
Slowly but surely, we will get there. Our condition, whether it be eczema or TSW, can feel so lonely and strenuous to navigate. But keep going. The tides are turning, I can feel it.
Cue "Can You Feel It?" by the Jackson Five.
Have you ever refused a medication or treatment?