The following is a letter I personally sent to an ITSAN board member on 1-6-2016 to express my contempt for ITSAN’s deeply flawed and injurious stance:
Good morning Mr. Z….:
Thank you for your email of 12-21-15. I started ITSAN based on my research, my thoughts, my findings, my patient care, my videos and my funding. The mission of ITSAN was clearly to end RSS and the unnecessary suffering of unfortunate patients.
You ask why I criticize ITSAN now? Three particular items from your website and Facebook page raise my ire:
- Quote from your site – “As of this publication, there have been no proven methods of treatment that speed up or cure RSS. This condition resolves over time, and resolution of withdrawal symptoms varies on a case to case basis.”- I have spent 35 years treating, infections, anxiety, pain, burning, itching, sleeplessness, attending to patients so they do not get admitted to hospitals wrongly and treating all parameters of this disease so the patients can function, work, school, play, live. All this with an abundance of psychotherapy and ITSAN says “there is no treatment?” That belittles and denigrates all that I have done. Just follow the website of ITSAN coupled with time is all that is needed?
- The quote below is on the ITSAN Facebook support group -outrageously frightening wrong-minded advice. This strong worry about adrenal suppression and other things is blatantly false and not borne out from my experience. It creates extreme anxiety and the use of expensive testing and consultations. This is giving them wrong medical advice.
- ITSAN advises “get a doctor” but the patients need guidance! They have exhausted the sources in their home areas. They need help, not lip service. That is where the idea of getting a list of helpful and caring physicians obtained with a letter writing campaign by ITSAN comes to mind.
So now you have my response – let me know your thoughts.
ITSAN Facebook comment – (Item 2 above): “Before stopping topical steroid treatment: Patients should work with a physician on a plan for stopping use of topical steroids. Having a plan in place will help you feel prepared and will help prevent unintended consequences.
For instance, prolonged exposure to topical steroids on large areas of the body may cause certain individuals to develop adrenal suppression, hypothalamic-pituitary-adrenal (HPA) axis suppression or other adrenal symptoms. Stopping topical steroids when the adrenal gland is severely depressed can be life threatening. An ACTH test, usually performed by an endocrinologist, can rule out these conditions. Stopping long-term use of oral, injected, or inhaled steroids is NEVER recommended, unless under the direction of a doctor.
Going through RSS may require taking time off to recover. If you work, plan for time off work by looking into options for a leave of absence. If you are a parent or caregiver of someone going through RSS, you may need to take extended leave via the Family and Medical Leave Act (FMLA). College students may want to take a few semesters off or opt to take online courses until the later stages of recovery. For children and teenagers, it may be necessary to arrange for homeschooling or tutoring to allow for flexibility. In the United States, parents may be able to make a 504 plan which allows for adjustments and accommodations to a child’s education. Creating a plan in advance will alleviate the stress of finding last minute childcare or negotiating time off from work or school during a debilitating flare.”