Meet Noreen Jesani
Name: Noreen Jesani
Occupation: Shield Emerging Leadership Fellow at Blue Shield of California
Location: San Francisco, CA
Skin Condition: Atopic Dermatitis since childhood, Topical Steroid Withdrawal* since 2017
I feel like people with skin conditions often have a one-line explanation that they use to explain their skin condition to others. Tell us yours.
I often don't even realize i'm itching in public until someone calls me out- that's when you know your eczema is a part of you are you are one with your eczema. no but seriously, living with eczema becomes a part of your everyday identify and it's something i didn't even think too much about until the day i realized i was addicted to my topical steroid medications. Life dramatically turned upside down and it's when i began taking my health care into my own hands.
What are you up to in life right now?
I’m currently enjoying living in sunny California, learning how to ride a bike, and helping plan my sister's upcoming wedding!
How does your public health background inform how you navigate treating your eczema?
While getting my MPH in Boston, the program focused heavily on the various theories of behavior change and how people make informed decisions about their health care via needs assessments. Much of it is driven by perceived needs and benefits. Most of the time, we do not recognize that we have a behavior that needs changing. Once I realized that my body was reacting negatively when I stopped using topical steroids, I knew something needed to change to ensure that I remained healthy. I could have remained ignorant and continued using the steroids, but I did a lot of research and found ITSAN, a non-profit that exists to spread awareness on TSW. This is when I realized... wow.. i'm not alone. there are so many others like me, suffering from this condition. I knew I couldn't simply continue using this medication that was inherently harming me in the long run. Having a public health background gave me that push and knowledge to DO something proactive about TSW. My background in public health also informed my decision to create @tickle.eczema, but more on that in the next question!
You started @tickle.eczema on Instagram, which is part community and part resource, and also a place where you document your own eczema journey. Why did you decide to create the account?
When I first began going through TSW in 2017, I felt extremely lonely and scared. I found ITSAN, but still, felt confused how medication used to TREAT eczema could be doing the opposite to my skin. For over a year, I told myself I would start a blog to connect people out there that are suffering from this. Blogging is not easy! So I dropped the idea. Then I had a moment where I became very angry with manufacturers and skincare companies that do not practice any form of ingredient transparency in their products. I wanted to be the person who could do this, as a way for me to learn, and others around me. I knew I wanted to create some type of community and dialogue around all of this, and that was how @tickle.eczema was born. It's funny, when I created the account, I thought I was in a good place. I was using a topical medication called Protopic for my TSW symptoms, which was seemingly very helpful. Little did I know, this medication would throw me back into TSW, but this time - I was not alone. I took on the symptoms publicly with the eczema community, which honestly made it so much more livable. The encouragement from fellow eczema and TSW warriors is invaluable. So, what started off as an account to spread awareness and education became my online journey to healing, too.
What role do digital communities have to play in how we live with our skin conditions?
Digital communities are SO crucial - they provide education and personal stories to learn from. However, they can be overwhelming. Not everyone agrees on decisions made, and what works for one person might not work for someone else. It is a delicate environment that can provide support, care, and valuable information, but like everything else should not take over your life.
You recently went on dupilumab, the new eczema biologic drug. How is it going? How did you decide that biologics were the best course of treatment for you? Has your activism shifted focus in any way since going on the drug?
I started Dupixent in April and it has been a life-changer. I get very emotional when I think about it. For some context, I stopped using Protopic in January of this year, after learning about its negative side effects from fellow TSW warriors on Instagram (power of digital communities in action!!). This threw me back into TSW. Between January and April, I tried many treatments: celery juice, essential oils, patch testing, CBD, cutting dairy, etc. which I publicly documented on my IG account. Sadly, I was getting no relief. This is when my dermatologist recommended trying Dupixent. I was very weary and genuinely AFRAID. but I was also desperate to live a normal life again... i've now been on Dupixent for 2 months and i'm so happy. I finally feel like myself again. My skin is not perfect, but it's finally not taking up 100% of my brain space.
My activism has shifted focus to now documenting the effects of the drug for those that might be interested. I am trying to provide education and my personal journey as a means for others to learn about the drug and have a support system to lean on. I still care deeply about TSW, and will continue activism in that space, but right now I want to share with others how Dupixent is going.
Where can we keep up with you?
The best way to keep up with me is through my instagram account, @tickle.eczema ! This is where I post updates on my eczema journey and share other topics of interest related to eczema.
*Editor’s note: Topical steroid withdrawal is not well understood by the medical community, and many dermatologists do not believe that it is real condition. To see the the National Eczema Association’s scientific paper on topical steroid withdrawal, click here.