February 3 is TSW Awareness Day and ITSAN’s 11 year anniversary as an incorporated nonprofit! We have come so far in the battle for recognition, accountability, and prevention. What can you do? We need your help to get Topical Steroid Withdrawal Syndrome officially recognized by your state, to help promote research and provide support and protection for TSW sufferers and their families! Join us on Wednesday, February 15, at 8:30pm EST, as Kelly Barta, ITSAN Executive Board member, shares how to connect with your legislators. Kelly will provide the tools you need to get a TSW resolution passed in your state or province. We know that TSW sufferers and caregivers often struggle to be heard and understood. Learn how YOU can make a difference! TSW Advocacy Training Wednesday, February 15 8:30pm-9:30pm EST Register in advance for the meeting here: https://www.itsan.org/advocate/ After registering, you will receive a confirmation email containing information about joining the meeting. Thank you! #tswawarenessday #tswadvocacytraining #endtsw #preventable #thisisnoteczema #topicalsteroidaddiction #tsa #topicalsteroidwithdrawal #tsw #redskinsyndrome #rss #topicalsteroidwithdrawalsyndrome #tsws #itsan #dermatology

 The early vision and longing of us vets of TSW advocacy was to see this largely ignored Topical Steroid Withdrawal Syndrome to be recognized and go viral. ITSAN.org and everyone who ever shared their story in order to slow and eventually stop this train of suffering can now see the fruit manifesting from those seeds after 10 hard years of this labor of love and pain. Thank you Kelly Barta for sharing your story "To Eczema With Love" as hundreds of others have done, baring their soul, emotions and skin to the whole world in order to bring the burning skin community and world hope and help! Well done my comrade. 👏

MY Childhood Eczema Story

 

I had very, young childhood eczema, like my older brother and dad. They grew out of it, I didn't. The difference, they didn't use topical steroids. My story.

https://patientslounge.com/conditions/My-Topical-Steroid-Skin-Addiction-and-Withdrawal-Story?fbclid=IwAR2H2uUEKLPfT5-GuRceRMMekcDvhFNlGGVDR_lzYTWyxSHsFcQECqc5kPU

Have You Gotten Your Eyes Checked?

I'm republishing this post from 2014 as it is impertinent that anyone that has used topical steroids for a longer time than two weeks, pay close attention to your eyes. There is a wealth of information on the ITSAN site as well. 

Update November 2021: I'm having 6 month check-ups on my eyes at my Opthamologist's direction to keep an eye on what may be macular degeneration, plus mild cataracts since my 2014 post. I'm now 66 years old and understand that this may be an age issue but I never rule out the long-term effects of lengthy topical steroid use. The rest of this post is republished from my first writing.

"You may be old or new to the Topical Steroid Withdrawal Syndrome (TSWS) world, but if you have not heard about how this drug can affect your eyes, please do read this blog post by Dr. Fukaya about it. My good friend, Dr. Fukyaya worked hard and diligent for years as a dermatologist and published much of his findings. 

http://mototsugufukaya.blogspot.com/search/label/25%20Ophthalmological%20complications

Whether you are a mom of a child withdrawing from steroids or a teen or adult, it is very wise to have your eyes checked as many are finding that they not only have skin issues but the eyes can be affected as well. This is not to say that eyes cannot recover as well as mine do seem to be less photosensitive now in my 42nd month of topical steroid withdrawal.

I've had some problems with my eyes since withdrawing from all topical steroid 42 months ago after 40+ years of using it. I didn't know about the eyes being affected so my first eye exam was about a year ago and it went quite well considering all the years this drug entered my body.

I had very dry eyes that burned and blurred a lot which I contributed to long hours on the computer and I'm sure that just added to the steroid induced eye afflictions. I also had swelling if I ate chocolate, bloodshot sore and dry eyes that could not tolerate any sunlight without pain and sunglasses. This peaked in my later months after the 27th month point of major improvements in my skin. It seemed to be a delayed reaction to the ts in my case but nevertheless, it was a problem that concerned me.

The eye exam took about an hour since you have to get drops to dilate them and then several tests to check out all functions.I very much dislike that word "dilate" these days but it did reveal a small scratch or injury on my right cornea that puzzled the eye doctor. He asked me several times if I had some type of injury or scratched my eye to which I replied "no" each time and finally said "it's the steroids, they affect so much it's crazy." He doubted it very much since he prescribes the steroid drops for eyes and has never seen that but he also does not know about topical steroid addiction like so many others in the medical community.

I left with the comfort of knowing at least I don't have cataracts, glaucoma or retina problems like some others in TSW have had. I cannot stress enough that reading this blog and having eyes checked is best sooner than later in the withdrawal process."

Steroid-Induced Adrenal Issue Awareness is Happening!

 

My Topical Steroid Withdrawal Syndrome Story

I wrote about my own topical steroid withdrawal syndrome (TSWS) journey about 8 years ago. I will never forget the trauma and intensity of that 27 month, dark night in my life. I am committed to telling my story everywhere I go and to help raise awareness of TSWS and to help prevent this preventable travesty in other people's lives. Hubpages recently promoted my article to the "Patient's Lounge" which will raise views and reach more people! Yay! Read my story and see my pics here.

ITSAN 2014