Author Topic: ITSAN Survey Results Presented to the American Academy of Dermatology!!  (Read 993 times)

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Offline pfwindsor

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How many of you have taken the ITSAN survey?  Have you ever wondered how many people have responded (more than 5,000) and what happened to the survey results?  About two years ago I wondered the same thing and asked ITSAN's permission to review the data.  Fast forward through the time it took to recruit a qualified research team, complete the analyses, submit our Abstract and have it accepted by the  American Academy of Dermatology, complete the Poster and present it at the Annual Meeting of the AAD in March 2017. 

What makes this study special is that our primary author, Tim Berger, M.D., is a respected dermatologist at a respected academic medical center (University of California San Francisco), former Vice President of the AAD and close associate of the National Eczema Association - all of which bring additional credibility to our patient population and to the findings.  Your dermatologist probably knows his name.  It was especially interesting and rewarding for me to watch his excitement as the results began to emerge and I remember the exact moment when he acknowledged the findings as compelling and suggested that we submit the findings as a Poster Exhibit to the AAD.  Another special moment for me was attending the NEA Reception at the AAD Annual Meeting and "working the room" only to find that Dr. Berger had already personally shared the Poster with the entire Scientific Advisory Board of the NEA.

Our research team also included a professor of health informatics (biostatistics) at the University of San Francisco, who guided the statistical analyses of the survey results with the assistance of her graduate students, as well as the physician who authored the original survey and developed the TS exposure measures.  As we began the study, each finding led to additional calculations and the analyses continued to evolve for over a year.  I believe that ours was the first effort to attempt to quantify exposure to TS and to study the relationship between exposure and symptoms.  Ultimately, the study found statistically significant relationships between exposure (calculated as a function of quantity, potency, areas of application) and observations such as duration of symptoms as well as statistically significant correlation between age and percent of skin affected as well as age at first use and certain observed symptoms.  An interesting note, Dr. Berger had us focus on survey responses by adults, because he believes that the pediatric population requires separate study.  The study concludes, not surprisingly, that more study is needed. 

Please check out the full poster at:

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When you view the Poster, please be sure to click through the "COSTEX" link to see the formula for TS exposure.

Last, but not least, a big thank you to ITSAN's co-founders and current leadership for allowing me to use the survey data and for your patience and moral support while I took this journey!  This experience has taught me how slow and difficult it is to move the needle on medical research.  Two years of hard work is really just baby steps forward for our mission, but I hope will help pave the way for every research opportunity to follow.

Best,

Pam
 
« Last Edit: March 25, 2017, 04:57:21 PM by pfwindsor »
20+ years of TS use; started TSW October 2013

Offline sarahk

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THIS IS AMAZING, thank you for your hard work
*hydrocortisone, occasional, 20+ years
*1 week course of oral prednisone, 08
*Elocon periodically 08-12
*Olux E Foam ~1-2 mo., 12
*Topicort, occasional 12-13
*Elidel, occasional ~6 mo., 13
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*cataract surgery, 2014
*shot in ER April 15
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Offline Joey VanDyke

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Awesome work, Pam and this was a long-time project that ended up being supported by a respected dermatologist which is great progress for ITSAN! Thank you so much and may we continue to forge ahead with our crucial cause!  :thumb up: :shake-hands:
Started TSW 9-2010- fully healed at 62 months. :)

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Offline Andrew B.

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Very cool, I think the hardest part is when doctors look at us like we are crazy. It's a lot harder to call 5,011 patients crazy when the symptoms and history lineup with this kind of correlation.

Thanks for leading this project!
Used TCS for 15 years before starting TSW in early 2013.


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Offline Joey VanDyke

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It truly is a hard push up the mountain and we have very few dedicated workers like Pam and you, Andrew, but little is much when you put your whole being into it. We are doing everything to reach the docs and one did tell us that ITSAN is becoming well-known in the dermatology circles and is a lot more respected so this was good to hear!  :smiley:
Started TSW 9-2010- fully healed at 62 months. :)

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Offline BraveC

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Thank you for posting this and all that were involved in organizing this. Hopefully, this can lead to bigger and better things.
Parent of 4 Year old. Applied Triamcinolone .1% 2 to 3 times a week for 3 years. Also used Protopic and had prednisone a couple of times. Quit October 2015

Offline greatprospects

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WOW.....just...WOW...😳

 Pam, I had no idea that you were doing this. Really just makes me want to bawl my head off. To see such tremendous strides being made to get the medical community to acknowledge this beast. I am just a week shy of 50 months into this battle and still in the tar pits unfortunately, though nowhere as bad as at the beginning back in 2013. Good grief, sometimes I just can NOT believe that I am still in this state.   I am SO glad you made this post, SO encouraged to know that , uphill battle though it be, SOMETHING is finally happening!

My hat is off to you Pam and to Joey and Kelly Palace and all of you who have been instrumental in getting this information out there. ITSAN has been a life saver to me and so many who had no clue what on earth was happening to us. Joey, after a year of many dollars spent trying to get to the root of my skin issues, the AhHa moment came when I saw that crazy red arm of yours....which then led me to ITSAN and the pics of Kelly. I screamed and hollared!  What a relief it was to know FINALLY what was wrong.

Anyway, all that to say THANKS!!!

Lori

Started TSW Feb 17, 2013.

Offline Joey VanDyke

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How nice of you to post this, Lori.  :smiley:

We rarely hear thanks these days and I am very proud of Pam for all the work she did to make this presentation!  :thumb up:

Kathy Tullos is also a great help to the ITSAN cause and we thank dear Kelly much for her outreach from her withdrawal and the birth of ITSAN.  :61_flower:

I'm so glad to hear my pics helped you, my friend! We have worked so hard to get to this point and I hope the funds keep coming in so we can continue.  :wink: :rainbow2:
Started TSW 9-2010- fully healed at 62 months. :)

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Offline pfwindsor

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Lori,

Thank you for your kind words. I only wish I could do more and do it faster. Nevertheless, I will persist  :smiley:

Best,

Pam
20+ years of TS use; started TSW October 2013

Offline greatprospects

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Pam -

NOTHING about this thing is fast....😁

Keep up the phenomenal work. Many many blessings to you and everybody responsible for getting TSW into the medical community's faces.

Lori

Started TSW Feb 17, 2013.

Offline readytoheal

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Re: ITSAN Survey Results Presented to the American Academy of Dermatology!!
« Reply #10 on: April 29, 2017, 12:30:50 AM »
Joey, I was sorry to read that you never hear much thanks these days. I am personally so thankful and grateful for all you and the other pioneers and hard workers of ITSAN have and are doing. I figured out what was going on with me thanks to ITSAN...how terrifying tsw would be to go through and not know what was happening! The support and information have been invaluable. Thank you so very much from the bottom of my heart!  :smiley: :61_flower: :heart:

Offline readytoheal

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Re: ITSAN Survey Results Presented to the American Academy of Dermatology!!
« Reply #11 on: April 29, 2017, 12:35:09 AM »
Pam,  I also want to thank you so much for your dedication and hard work!  :thumb up: