We all may be walking beside each other, but our stories are never the same.
Work: Stay at home mom
Date of Withdrawal:
What type(s) of steroids did you use?
Hydrocortisone, Clobetasol, Prednisone
Are you on any other medication?
Do you have a supportive doctor?
What is/was your favorite comfort product?
CeraVe and Aquaphor
What is the hardest thing you’ve had to endure during your withdrawal?
Getting shingles on my face (7 months in), and developing a cataract —in a matter of weeks— that left me blind on my right eye (19 months in).
What is one thing you are grateful for during the withdrawal process?
I’ve realized I’m stronger and braver than I thought and I’m grateful for my husband who I had just started dating when all this started. He never left my side and decided to marry me in the midst of this hell.
How did you discover you had TSW?
I was researching Dupixent and found comments mentioning TSW on the reviews. After I found ITSAN’s website and read the symptoms, I just knew it. My symptoms matched perfectly.
What were the first tell tale symptoms you experienced?
Bad facial rashes, swollen eyelids, and oozy nipples.
What is one memory during the withdrawal that you will never forget?
I was in the bathtub feeling absolutely disgusting and hopeless, contemplating suicide, when all of a sudden I noticed the sound of the wind. It brought back a memory of my childhood, laying down on a hammock at the beach, feeling absolutely blessed. At that moment I felt more alive than ever and all the bad voices disappeared. I could hear God whispering in my ear: you can do this.
How is your TSW journey going?
I’m currently between flares.
If you had a call to action for the medical community, what would it be?
Stop gaslighting patients
What was a pastime you used to help during TSW?
I listened to a bunch of podcasts.
What is something you wish to share with the community?
Please, stop pushing NMT on people
What is a quote you live by?
The Lord gave, and the Lord has taken away; blessed be the name of the Lord.
What resources help during TSW?
- Skin on Fire
- TSW Atlas
What is your instagram handle?
Thank you, Daniela.
We love you. We see you. We are you.