A Big Hello to all of you amazing TSW Warriors and Caregivers!
In case we haven’t met yet, my name is Kelly, and I’m your new ITSAN president! I live in Atlanta, Georgia and have been traveling this crazy, unpredictable road of Topical Steroid Withdrawal for 6 years now (next week!). Two years ago, I met Joey Van Dyke for coffee in my native state of Michigan to see what work ITSAN was currently involved in and how I could help. I walked away from that meeting having agreed to join the Volunteer Executive Board and the following year stepped into the role of Executive Director.
This past year, I have also had the privilege of working with the National Eczema Association, advocating on state and federal levels for the eczema community with some great success. Georgia has now declared October Eczema Awareness Month! Additionally, we have made progress in amending Step Therapy Protocol laws, in which Health Insurance Companies mandate that patients have to try and fail drugs (like topical steroids) before getting the treatments they and their doctors believe are best.
Earlier this year Joey approached me about taking over her position as President and, admittedly, I had some inner turmoil over the decision. I felt the weight of the responsibility to represent and navigate change for such a dire need. Over and over I have asked myself in this process of doors opening before me, “If, when I was in the throes of TSW, suffering so terribly – living between the bath and my bed, isolated from the world around me – there was someone in the position that I am now, with the ability and opportunity to tell the TSW story and to change the tide regarding this condition, would I want them to do so?” The answer has always been, “Yes, absolutely I would.” Warriors, I stand, I work, and I fight for you. And I do this for all of those who are coming along behind us, and for those that can be saved from TSW/RSS in the future by proper education and treatment.
I join in the sentiment we all share in that I am so thankful to ITSAN, for providing an answer and support when I first discovered this condition. I am truly thankful for Kelly Palace, co-founder of ITSAN and past President, and for Joey Van Dyke who have carried the torch and held it high for all of us to see, even while opposition raged about them and they were fighting through their own physical battles. Incredible, heroic women, whom I’m honored to follow after.
And, as I continue their work I am FULL of JOY at the opportunity to help end this suffering and honestly am giddy at the progress that has been taking place for our community.
Want to hear some goodies that have been going on behind the scenes?
I’m super excited to share the outcome of our experience at the International Investigative Dermatology conference 2 weeks ago in Orlando. This conference takes place once every 5 years and is attended by thousands of dermatologists and scientists from around the world. We knew it was really important for us to have a presence there in order to continue our mission of raising global awareness and also to network with these individuals. Here are a couple of highlights:
First of all, I was delighted that we had such a positive reception! We were treated respectfully and were listened to with eagerness and curiosity. I had printed out the 30 case studies that had been collected from our members and presented them in a binder on our exhibiting table along with thumb drives loaded with the studies for interested attendees to take with them. All of the thumb drives were picked up and many individuals paged through the studies, full of questions and genuine concern.
I met a Professor and Dermatologist, Jack Arbiser MD, PhD, from Emory University, our teaching hospital here in Atlanta. We talked for some time about TSW and I asked him if we had a gathering/conference here in Atlanta would he bring a group of colleagues and students to come and join us. He affirmed that he would! (Let’s do this!!)
A couple of executives from the International Psoriasis Council came and chatted with us about our two organizations. I asked how they had developed into the level of influence they have now – their response? Learning and networking at conferences like this, and by following the example of other established organizations. I followed suit and grabbed every piece of literature they had on display! They also gave some clues about finding prevalence, one of our big future objectives. They are mining public electronic data put out by institutions like Medicare. This method is also being used by some students from Yale that we met who are working on the prevalence of the opioid crisis. These students were sharing how back in the 80’s and 90’s doctors were educated that opioids were non-addictive which led to the exploitation of prescribing these drugs and the ensuing crisis we now have. Sound familiar?
A Dermatologist and Clinical Professor from Stanford University talked with us extensively and I was pleasantly surprised to hear that they are educating their doctors to first try natural alternatives to treat eczema before resorting to pharmaceuticals. She invited us to exhibit at their meeting in September, which we will be looking into.
Going into the conference, I was really hoping to meet with some executives from a pharmaceutical company to discuss the possibility of running a prevalence study alongside a clinical trial for a biologic to treat Atopic Dermatitis. Last year I met with the President of the American Academy of Dermatology who said he doesn’t believe that TSW is really taking place on a significant level, stating that he had never seen it in his 40 years of practice. I asked him where he recommended we start, as far as research initiatives go, and his answer was in prevalence. I agree with him; until the medical community can see that TSW is not an anomaly or a rare occurrence, the education of prescribing measures for Topical Steroids and the Standard of Care for eczema will not change (I personally believe that prevalence could be higher than 10% of TS users, which would be an estimated 3 million in the US alone).
Sooooo…….I was getting myself a cup of Lavender Earl Grey tea at the drink station in the exhibit hall and bumped into a man with a French accent getting one too. We started chatting and lo and behold, he worked for a pharmaceutical company! He slipped his card in between two of my bandaged fingers holding my two cups of hot beverages (it was cold in that hall!) and told me to catch up with him later. I went back to the condo Briana and I were staying in that night and looked him up. Ends up he is the President/CEO of this pharm company and had previously headed up the Dupilimab trials! What?! The next day I kept looking for him, but he was nowhere to be found. I decided to bring my questions to a colleague of his instead, who happened to be the perfect person for me to talk to, their VP of Business Operations. This man spent 20-30 minutes giving me the run-down on what steps we need to take to pursue a study like this, including estimated costs of “proof of concept” ($10,000) and clinical research organizations ($250,000). This information is gold, as we move forward into grant writing this coming year.
Both of the Directors of Research and Clinical Affairs for the National Psoriasis Foundation and the National Eczema Association were there, and we talked quite a bit about the issue of the long-term use of topical steroids for managing chronic conditions in these two patient populations. Both were engaged and understood the need for more research regarding TSW. Getting TSW on the radar of those making decisions regarding research objectives is so important as studies are urgently needed to find how common the condition is, why some of us develop these adverse reactions and more viable treatments for those of us going through it.
Another goal of this conference was to connect with scientists who will take up our cause. We were approached by an inquisitive, curly-headed woman with bright eyes, asking what we were all about. Turns out she’s a Texan living in Scotland, working as a biochemist for a famous doctor/researcher in the AD world, Irwin McLean. !!! She poured over the case studies, fascinated, asking a ton of questions, saying she was definitely going to bring all of this information to her boss. Her accompanying friend, the physicist, agreed. I asked if Dr. McLean was currently working on a project and she replied, “No, but he is fishing for one.” !!! I’ll let you know what comes of that….
There is so much positive discovery happening in the world of Atopic Dermatitis. Not surprisingly, researchers are finding that AD is very complicated and has a variety of driving factors. That’s why certain treatment methods work for some but may not work for others, and also why it can be so exasperating to figure out how to manage and get to the bottom of each personal case. It’s a good time for us to be heard amidst all of this energy. During the conference, I overheard someone say that 5 years ago there were 3 posters at the IID having to do with AD, this year there were 111! I really loved hearing about more natural and alternative methods of treatment being developed, like an ointment of Staph. Hominis to combat the barrier disruption and inflammation promoted by Staph. Aureus on eczematous skin.
As far as ITSAN’s plans for the future, we are committed to continuing to raise awareness, promote research, and support our members wherever we can. Next month, I was given the opportunity to speak during a break-out session on advocacy at the Eczema Expo in Chicago and look forward to connecting with many of our people there. In July, Jodie Ohr, our new secretary, and I will be attending the American Academy of Dermatology’s Legislative conference, where we will have a chance to tell our TSW stories to our legislators on Capitol Hill, along with networking and learning from other organizations who are also part of the Coalition of Skin Diseases.
I’m excited to have my niece, Madison Miller, who is studying Biogenetics at the University of Georgia, intern with us this summer. You may be hearing from her as she will be working on collecting a list of TSW supportive doctors for us, as well as continuing to gather case studies, and research articles for a “proof of concept” study.
As we take on the goals of running a prevalence study, hosting a future conference, and developing a more efficient and productive way to support and educate our members through our website and FB groups, obviously we need a lot of help! Currently, ITSAN is run on a bare-bones budget by 3 part-time (mostly) volunteer individuals who have day jobs and families. We really need to get to the place where we can hire full-time staff to accomplish these tasks. We need YOU! Everyone is good at something and can contribute a piece of the puzzle. If you want to get involved either with offering services or a financial gift toward operating expenses, please reach out and let me know! I would be more than happy to talk with you and see where you can make the most impact in joining this great cause. Thank you to all who have participated thus far!!
Together we can end TSW,