FIRST Dallas Patient Support Forum ~~ June 8, 2013
As Moe Wenik and I rode the trolley through the streets of Dallas, from downtown to West Village to Uptown and back, it was hard not to notice the presence of a fresh new city face. Construction sites lined nearly every sparkling-clean city street, and there was certainly no lack of upscale restaurants, trendy southwest terracotta capped condos – or hip, young-ish Texan professionals.
Dallas is, in fact, is a very pretty lady.
And although it was our very first visit to Dallas, neither of us felt very new-in-town – as the entire city had a sort of wide-eyed, first-timer feel. However, something caught our attention just a bit more than the freshly fashionable ambience – yet…oddly enough…it was not a presence, but an absence.
“Where are the cowboys? The belt buckles? The fanciful, spurred leather boots?”, I asked repeatedly throughout the evening. Well it appears that my vision of Dallas has taken up residence on the pages of historic American cliché, alongside its iconic cliffhanger, “Who shot JR?” I returned to the hotel, having gobbled down the best turkey burger in town (Village Burger), knowing the history of the 100 year old Dallas trolley car, and with a slight twinge of disappointment about the cowboys, or lack thereof.
The next morning, however, I would attend my very first FIRST Patient Support Forum – and soon any twinge of disappointment about our trip to Dallas, would be wiped from my mind. It was not only a day free from the inkling of “absence,” but a day full of everything I have come to admire and appreciate about FIRST: education, inspiration, and connection. There would be no lack of patient support, peer-to-peer story sharing, medical advice and updates from the top practitioners in the field of dermatology, and …drum roll…hi-tech communications.
Anticipation filled the room as our esteemed panel of speakers including Dr. Moise Levy, Dr. Meena Julapalli, Dr. Fred Ghali, and Dr. Keith Choate (via webex), took center-stage and offered a riveting summary of the latest genetic research and skin care therapies, plus upcoming projects and events for the entire ichthyosis community.
If you were unable to attend, below is a brief summary of some of the highlights extracted from the days discussion.
Old School Therapy is Still the Best Option:
Overall, the consensus amongst doctors and attendees was that skin care is very individual – you need to do some trial and error to see what works for you and your particular skin condition. However, many of the general tips did not require a hefty investment, or any particularly complicated regimen.
- Keeping a journal of “solutions” will help to establish a beneficial and permanent routine.
- Bleach – Some participants agreed that a simple bleach bath is effective for some types of ichthyosis, as a skin softener and for bacteria and odor control. Although the precise measurement of the mixture varies from person to person, it is recommended to use approx. 1 to 2 teaspoons per gallon of water.
- P & S Liquid by Baker Cummins Dermatologics – This simple and inexpensive ointment is highly recommended for loosening and removing scalp scale.
- Virgin coconut oil is natural moisturizer and disinfectant and highly recommended by some of the attendees (cost effective too!).
- Pedi Wands can be found in most beauty supply stores and can be great for getting to those hard to reach areas! (Pedi-wand is a pedicure wand).
- Switching from lotion in summer to ointment in winter can be an effective way to keep skin moist, smooth.
- Frogtog – In addition to cooling vests, this product is recommended as an easy-to-use neck wrap and great for beating the heat. (available at Walmart)
- True Blue Morracon Oil from Bath & Body Works – Recommended by a few female members as both a sunscreen and a lotion, with a light feminine fragrance.
- SPF 15 offers 94% of UVA protection; SPF 30 offer 97% protection, however, sunscreen brand is really an individual choice. Fragrance, consistency, price point etc., are truthfully the deciding factors. (FYI – there is also a significant price difference in “children’s sunscreen”, but it is, in fact, the same ingredients.)
- Salt vs. Chlorine – If you are prone to infection, chlorine pools may be helpful However, for dryness, salt water pools have been reported to help as well. Once again, trial and error will be your best way to assess the best treatment for your condition.
New School Studies are Presenting Fascinating Results…
Dr. Moise Levy began his presentation by mentioning the importance of client contact and how conversation and listening is “just as important for healing as anything else.” Subsequently he felt that the FIRST Patient Forums provided just that: an opportunity for one-to-one interaction. His remaining presentation was abundant with an overview of current therapies for ichthyosis. Some highlights included:
- Personalized Treatments – Although they are years away from being available, personalized therapy, also referred to as “boutique therapy,” are on the forefront of therapeutic research for dermatologic disorders.
- An Overview of Current Therapies & Cost Analysis of Treatments.
(Dr. Levy’s full presentation will be available on the FIRST’s website in upcoming weeks. Stay tuned for announcement.)
Dr. Keith Choate presented his work via Webex with a live face-time feature Dr. Choate gave a robust and fascinating presentation on the New Frontiers in Discovery – Genetic Approaches to Human Disease.
Some of the highlights included:
- Explanation of heritable traits, the DNA genetic code, and how mutations arise
- Progress in Understanding Genetic Disease
- Overview of Human Genome Sequencing
- How advances in technology have led to progress in Genetic Research
Dr. Choate is also currently conducting genetic research at Yale University. The goal of his study is to understand how genetic mutations cause ichthyosis by obtaining genetic diagnoses for those affected with ichthyosis and comparing genetic data with clinical information.
“Knowing your mutation will enable you to participate in further research projects on your specific genetic subtype of ichthyosis, and may ultimately be relevant to what treatments will work best for you,” said Choate.
Abundance of New & Old Opportunities for Family Support and Self-esteem building…
Dr. Meena Julapalli, spoke of her and Dr. Ghali’s involvement and passion for many of the summer camps established for children and families affected with ichthyosis. Camps for children include: Camp Discovery, Camp Brave Skin, and the newly formed weekend camp for families, RoundUp River Ranch. It was Dr. Julapalli’s perspective that camps are the ideal opportunity for children with ichthyosis to meet and spend quality time together. “It is a chance for the children to thrive and be themselves; a place where they don’t have to be self-conscious”, said Julapalli.
As she shared some very heartfelt letters written by the children who had attended the camps, one particular phrase jumped from screen, engaging the audience and embodying Julapalli’s very own brand of enthusiasm for these types of opportunities: “Mom, this camp changed my life!” For more on Camp Discovery, Camp Brave Skin, and RoundUp River Ranch contact firstname.lastname@example.org.
As the day wound down, and Moureen and I were getting ready to head to the airport, we began to share our thoughts on the meeting, the day, and the entire trip to Dallas. Had it gone as planned? How might we improve? What will we always remember?
A slight and soft spoken young mother from Dallas came over to us. It was no coincidence that we were both deeply moved by the conversation. Although she had the most charming of Irish brogues, she was the type of person who looked kind-hearted, without even speaking a word – and who looked liked the past nine months, her induction into motherhood, and her first year of raising a child with epidermolytic ichthyosis (EI), had been a true test of strength.
It had been the family’s first event sponsored by FIRST – and the decision to attend had initially been accompanied by some reservations. “My husband didn’t know if it would help. But he’s really glad we came. He’s excited and really thinks we should get more involved now.” She hugged us both goodbye, and before walking away was sure to say, “You are doing great work. Thank you both so much.”
Our conversation returned to the young Irish couple throughout our trip home. “Yes, this is what it’s all about. We did our jobs today,” Moe said.
Then, just as I’d nestled into my corner seat at the boarding gate, it happened. In fact it happened so fast, I can barely even claim it as an actual experience. “Don’t worry, I took a picture,” Moe said, noticing the frantic frenzy of napkins and straws and paper bags falling from my lap.
After a good laugh and moment of getting situated again, I ripped the paper from my straw. “You’re right, this is what it’s all about.” And there I sat, feeling even more inspired by the value and mission of FIRST; more privileged to be a part of this incredible journey and looking forward to next group of families and doctors I may meet.
And…all the while…gazing at Moe’s iPhone, which of course framed the photo of … a cowboy.
[For more on Dallas conference visit Confetti Skin, The Beauty Within - where member Rachel See offers valuable insight from an attendee's perspective.]