A cured steroid addicted RSS patient forwarded the most recent advertisement from ITSAN to me. It is a call for patients to sign on to a study of RSS patients in Australia. It must be clarified for ITSAN that in appropriate medical parlance you do studies and lab tests when you do not have an answer to a medical problem or you want to change therapy. Otherwise the studies and tests have no medical value just the possibility of financial incentives. In this advertisement the appeal for donations on ITSAN’s cover page is problematic. What other study is needed when the answer and the cure is already known? It appears ITSAN is trying to keep itself relevant at the expense of suffering patients who are wrongly informed that “new data“ will be derived from the study.
I must inform those who do not know about the history and formation of ITSAN. A patient, Kelly Palace, flew to my LA office from Florida after reading my papers. She began the difficult topical steroid withdrawal protocol required to finally ease her suffering and together we formed ITSAN. The organization’s mission was to offer help, support, and information to the thousands of RSS patients around the world. By then I had written 7 published papers, had lectured extensively, and had cured approximately 1500 patients.
I am appalled by the direction that ITSAN has taken since I left the organization. Studies? Donations? Trips to Washington? Aligning itself with the National Eczema Society that solicits donations for a disease that has a known cure, partners with drug companies to sell and develop unnecessary medications to treat a disease that withdrawal from their medications cures, is completely unethical. ITSAN’s quasi informed doctors writing for them by plagiarizing my work and findings and then implying that they discovered the way to cure – it is immoral.
The harm being done to the tens of thousands of undiagnosed and suffering RSS patients by these false assertions and repeated requests for donations demands a response.
ITSAN should return to its original mission to offer help, support, and information that will encourage the withdrawal process necessary to cure RSS. ITSAN should be advising patients to seek medical care and helping them locate doctors who will assist them through the difficult process of withdrawal.
ITSAN has completely lost its way and is now harming patients not helping them.
If ITSAN is plagiarizing your work, how are they making false assertions that harm patients? This makes no sense. You just sound bitter.
I have held the hand of over 4000 patients and they are cured. To me that is “sweet” not “bitter!”
Dr rapaport, I am a year into a withdrawal that I hoped would only take a few months with my usage pattern of slightly less then a year. I wish I lived closer so that visiting you was possible as I believe you have done more then anyone to help cure people. That being said I do not believe that there is no room for more education and research to improve patient outcomes. Education can get doctors and patients using ts properly and educate doctors about the issues. I will see my 3rd derm next month to try and find one that even believes in red skin syndrome. With info from your site I have been able to get the correct treatment but not for them believing what is wrong. Education is needed badly and that requires budget for studies and presentations to bring the rest of the community around it would also be great if future research found something to speed up healing or reduce symptoms. We may never find it but I don’t believe we should stop trying. Itsan may not be doing it all correct, but we need the ability to get local support to get through this
Your comment is very appropriate but you must realize that after 35 years of treating 4000 patients and curing the and having a vast number of arguments with doctors that another approach must be taken. This has not worked. There is still too much suffering.
I am super appreciative of your efforts Dr Rapaport but you are but one person arguing about the merits of tsw when rss occurs. There needs to be more than one person and multiple studies to help turn the tide. You are right, there is definitely to much suffering!!
Sir: I have held the hands of 4000 suffering patients and pulled them through to cure. To you – that sounds like ‘bitter?’ To me it sounds ‘sweet.’
You must realize that there are well trained, informed dermatologists in cities and towns out there who understand this problem and remove the steroids from the patients. They just do not publish, they are not funded by drug companies, and their egos are totally intact, taking good care of patients. I have talked to and emailed several of these caring, understanding and scientific physicians.
There have already been studies in the US, including by the NEA, and in other countries resulting in the negative effects of steroids. Let Australia do more studies, waste time, and skew the results because big pharma is in the control seat. Look back in history and you’ll see that the big tobacco companies marketed cigarettes, funded studies and found doctors who were willing to say that smoking was not harmful and did not cause cancer. Well, we now know better. In my opinion, it’s the same with steroids. We don’t need more studies. We need more doctor education beginning in medical school, through journals, by the acceptance of the ADA, and we need consumer advocate groups brave enough to go up against pharma. Individual mainstream doctors are too “chicken” and too lazy to read any info we give them or to do any self-research and just keep doing what’s always been done. Dr. Rapaport, you keep giving and giving and ask for nothing more than the widespread acceptance that the overuse of topical steroids is dangerous, and for a reasonable fee if a patient wants an individual consultation with you. From Burning & Itching (much, much less after following your protocol)