TSW Syndrome Awareness in the News & Community
TSW Patient Perspective
“How many times have you heard ‘it takes time’ and ‘time is our friend?’ On our TSW/RSS healing journey, this is so very true. And as it turns out, it held true with convincing my doctor of 30 years that this is in fact TSW/RSS!
I used to think he was the coolest doctor, every time I came in with rashes on my body or face, he’d prescribe me the next strongest or newest steroid he had in his ‘closet.’ Four years ago, and after 57 years of using topical steroids I ran out of my latest cream. I called to have the prescription refilled and unless I came in to see him, he would not refill it. So, I said ‘heck with that’ and threw it in a box with many other mostly used tubes. Little did I know I would soon begin this horrific journey.
After a year in withdrawal, I decided to see Mr. Doctor to show him what over-prescribing and overuse can do to a person. He was in total denial, took samples of the ooze to test even though I told him the outcome would be staph, and it was. He prescribed antibiotics, I said no. Another year goes by and again, he is in total denial.
Year three rolls around and suddenly he’s excited about an 18 year old patient who ‘looks just like me’ and is clearing from Dupixent and I really must go on that. Again, I said no as I wanted to go through this journey as natural as possible. Then, shortly after my four year withdrawal anniversary I see him and am 90% clear. He was shocked and amazed and truly happy for me. I asked him to please promise me two things 1) do not over prescribe topical steroids and 2) share my story, ensure people are aware of TSW/RSS so that we can stop this madness, and he agreed.
So yes, time is our friend for healing, and being persistent with our doctors. How can they deny it when they follow our journey, when we keep showing up and educating them? Be your own advocate and remember, Healing Happens and time is our friend!”
Four Year TSW/RSS Warrior and still fighting
Speak Up About TSW
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