I refer you to this post I’ve created in ITSAN forums.
Do contact me if you are keen to be share your story and provide your perspectives on TSW.
Currently still looking for potential interviewees and firming up of interviewing questions. I should expect to send out my questions by the end of this coming week.
Update (23 Nov). Seeing that I was banned from ITSAN, here is the post in full for the readers:
I’m Leslie and am a new member and current TSW sufferer.
When I first found out that TSW is the cause of my symptoms, I was very angry at all the skin doctors whom have prescribed TS for my treatment. But the truth is that they are only trained and educated on the very conventional western medical institutions that says: “Diagnosed Ezcema? – Treat with TS”. The real problem of what led us to take their treatment advice is – ignorance or lack of awareness of what is actually happening to our bodies, and the horribly potential risks that application of TS can result in.
This thought lingered for the past few weeks and I just had to do something about raising awareness of this illness that has caused me and many others so much physical and psychological pain. One thing i realised is that the information out there on TSW is still pretty sketchy and all over the place. One has to first get news of ITSAN or chance upon some sufferers blog and do alot of research in order to actually know what is actually happening. This was my personal experience, suffering for TSW symptoms without knowing them for a good 2 years or so, and continually using bits of TS to ease my pain through it, until I found ITSAN in oct. So this is something I thought about and I would like to hear your opinions on this:
I want to write a book. I figured this is the best way to put information on the shelves, accessible to all people. It is one of the best ways to collectively consolidate information to a point source. It is one way to crystalize all of everyones experiences so that the book lives beyond our lives. It is something meaningful to do to a disease that has taken years of our lives.
The book concept will be a series of interviews of veterans who have healed from TSW, people who are undergoing TSW currently, people who know that they may suffer from TSA but due to certain considerations choose not to go thru TSW for healing, renowned doctors (Dr Rapaport/Dr Fukaya etc) on their perspective on TSW. It will be an information treasure trove about this little heard of disease.
Current and potential (people who are about to start their healing) TSW sufferers, parents, basically everybody who has in some point of their lives made use of topical steriods. I feel very sorry for the many parents who by virtue of their circumstances, do not know about TSA and continually apply TS to their kids, as well as many of us who have yet “stepped out of the matrix”. I want information to be out there, readily to be searched upon when needed.
Potential Interview Questions
The intent is to raise awareness, reach out, and provide comfort through the series of interviews and stories of real life participants. The content has to achieve this objective. Questions I’ve thought of included (and needs more refinement):
1) What is your eczema story? (the typical background story that landed us in this predicament)
2) Why did you stop using TS?
3) How did you hear about TSA and TSW?
4) What were your symptoms?
5) What were your lowest and highest point of this ordeal?
6) What methods of comfort did you use to ease your symptoms?
7) How long did it take before you felt you are healing?
8) If you have to go through TSW again, what would you have done differently?
9) Pictures of symptoms over time (this is a must as it provides visual confirmation of healing)
My request from this community is:
1) any refinement of this idea? or that this proposal is something that is not worth persuing?
2) refinement of interview questions, how to make them better, more purposeful, more effective in achieving my intent – raising awareness, providing comfort.
3) potential list of interviewees that you have known through this community, and are willing to be featured? (I believe this won’t be an issue as I believe many of the healed veterans and current sufferers have the good intention of reaching out as well)
4) general thoughts on this post…