This is a REALLY quick blog to share a petition created by my lovely friend Sofia who is also going through topical steroid withdrawal (TSW). There is currently very little real scientific research going on and we need this urgently!
If you don’t know what TSW is, you can dive down a rabbit hole with my other blogs on the subject or read my new and growing TSW FAQ here.
But basically, in a nutshell, it is when the topical steroids prescribed to heal our eczema has created an all body iatrogenic condition which can last for months of years as the skin and body organs heal and begin to do their jobs properly again. It is painful, brutal and mine has lasted 2.5 years and counting.
Doctors to not recognise it is a problem.
Dermatologist do not recognise it is even a thing.
We are all fighting to heal with little or no medical support. This has to change! We need research to discover this happens to some of us and how to prevent it happening in the future.
Click on the button below to sign the petition to help us get funding to research into TSW
#thisisnoteczema
Please take just a few moments to sign this petition. It would mean so much to me.
Thank you all in advance.
TSW research
It’s so important! Thanks for the comment.
I have suffered from eczema for 25 years and now starting the tsw process and it is brutal tsw is real and so debilitating wish someone would told me something anything
Hi Alexa, I am so sorry too, this should not be happening to you, but you are not alone. There are lots of us going through it. If you need any help let me know. My FAQ may help https://whatallergy.com/tsw/ It’s so wrong that we are not warned. I wish you all the best with your topical steroid withdrawal healing journey.
Hi there,
I am 49 years old and have been using topical steroids for egzema my whole life. I tried to use as less as possible but you know – it’s a vicious circle!
For the last two years the condition worsened so much that I had to undergo very intense steroid treatments (TS, pills, shots) that lasted a year.
It was crazy. I didn’t look like myself as soon as TSW onset, but my doc gabe me than another dosge etc.
Three weeks aho I found out about TSWS and now I am off medication for a month. It’tough.
It so important to share awareness about this condition – the years of despair and suffering, stolen years of childhood, broken marriages, jobless…doesn’t have to be.
I wish more people find out about this.
Thank you
Thanks so much for your comment. Yes we need so much more awareness because doctors just don’t know how to diagnose it, and they make the condition way worse in the long run. No one supports us through this and it’s truly the most horrible thing I’ve ever been through. Coming out the other side here so I do have hope that I can heal and that you can too. Do get help if you need it though. Don’t suffer in silence.