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.