I went from doctor to doctor only to have them do more testing on me, more bloodwork, more biopsies, more venous dopplers, all with normal results, only to conclude that I was a “highly allergic,” “rashy” person whose diagnosis was “eczema” or “contact dermatitis.” Many doctors concluded that I was inadvertently doing something to perpetuate the problem with my food, perfume, or some other factor. And of course the only solution was more topical cortisone creams or prednisone. For years my instinct said that the corticosteroids were causing me problems, but my complaints to the MDs were ignored and dismissed and I was told the symptoms were caused by “stress” since, in their view, topical steroids could not possibly be absorbed systemically (despite the warning in the product box itself.).
In Sept 2013 I discovered the diagnosis of steroid atrophy and topical steroid withdrawal on line and knew that these explained my condition perfectly. I took myself off all corticosteroids. But virtually no treating doctor of mine in NY or NJ acknowledged the possibility. The stress from these dismissals, misdiagnoses, medical bullying, and mistreatment of my condition was tremendous and made my condition so much worse. It led to periods of intense anger, increased depression, hopelessness, and low self esteem and self doubt. In my desperation, I flew out to you in California from NJ and within minutes you recognized this as TSW and RSS and told me that although it will take years, it will go away. Your detailed review of my records, listening and understanding was my oasis in my desert of despair. I walked out of your office after our first appointment (we had several,) and felt completely vindicated, understood and hopeful about my recovery and my future. I have been off topical steroids for almost 2 years and saw you 2 months ago, and these days I am seeing progress everyday, without expensive drugs and treatments. No pain, less swelling, better color and skin, more joy in life, more activity. I commend your knowledge of this area and your persistence, as I imagine you have been dismissed as well. And I am furious at the ignorance and mistreatment of the medical community.
Why did it take 7 years of suffering before finding the one doctor across the country who could finally listen to what I was saying and help me? Why did no treating physician (except for 1) even acknowledge the possibility of systemic absorption of topical steroids despite the warning in the box? What is going on here that either physicians legitimately don’t know about it, or refuse to know about it, and blame the patient? Even a lay person knows that the skin is the largest organ in the body that absorbs and excretes substances at times. What is the real issue here that is preventing proper treatment of this condition? Isn’t there a basic guiding principle in medicine of “Do no harm?” Clearly, we have been harmed. Thank you, Dr. Rapaport, for your research, your persistence, and for being the exception to all the bad medicine that has been done to us.”
Laurie Schlussel, PhD