Hello! My name is Kristin, and I am battling a very debilitating condition called Topical Steroid Withdrawal (TSW). I’ve been going through this since I was just 16 years old, and I just turned 25. That is 8+ years of living through this pain on a day-to-day basis, and a third of my life now.

Topical steroid withdrawal (also called topical steroid addiction, red skin syndrome) is a severe condition that occurs as a result of stopping the use of topical steroids when the body has become dependent on them and undergoes a rebound effect. It’s like a drug withdrawal. It’s an iatrogenic condition, meaning it is inadvertently caused by the medical treatment given. It isn’t just topical corticosteroids that can cause this condition, but also oral, injected, eye drop, and nasal corticosteroids. From what I understand as well, is that even immunosuppressants, biologics, and inhibitors such as Protopic, Dupixent, Elidel, Eucrisa, Methotrexate, etc., can either cause a similar withdrawal effect or do harm to the body. TSW is also completely preventable! Sadly, it’s not really accepted or recognized in the medical community, and people are often dismissed, misunderstood, unbelieved, and misdiagnosed with having “severe eczema.” Because of this, many people, including myself, have not been able to get the proper help, treatment, or support. Though it can take only a matter of weeks for the body to develop a dependency, it can take months to years to fully heal and recover from the damage that’s been done.

For me, it’s been an excruciatingly long journey. I originally had small patches of eczema as a kid and was prescribed steroid creams. But as I got older, my rashes spread and worsened, and I only received stronger steroids. I was never properly educated on the use of steroids and the potential harm it could do. After over 12 years of use, I began going through TSW and had no idea. It took over 3 years for me to find out the truth of what I was going through and that it wasn’t just bad eczema. TSW has taken a huge toll on me not just physically, but mentally and emotionally as well. It has impacted every area of my life and changed it completely.

My entire body has been affected - covered from head to toe. I’ve experienced a long list of symptoms throughout the years. My skin is naturally light and pale, but in TSW it turned a bright tomato red. I had the infamous red sleeves on my arms. My skin would be inflamed, flushed, and hot with a burning sensation. The itching is like nothing else; it’s bone-deep and insatiable no matter how hard I scratched. My skin would be left raw and sore. I’ve gone through unbearable cycles of having extremely dry, peeling, and cracked skin. There is constant flaking and shedding. I always wake up in a bed of dead skin flakes, sometimes with blood stains from how hard I scratched. My skin has thinned, gone through skin atrophy, had open wounds, hives, oozing and crusting, and both hyper and hypopigmentation. My body couldn’t regulate its temperature - when it was warm, I felt super hot and like I was burning up. And when it was a little cool, I felt freezing cold. I’ve become hypersensitive and easily reactive to almost everything and anything. To water, the heat, the cold, fabrics, skin products, my own sweat, common allergens, and the sun. Even a light breeze to my skin was painful. The slightest movement can put me through so much discomfort. Even just turning my head a bit or extending my arm hurts. Many times it’s been too hard to smile, laugh, and talk because of how bad the skin was on my mouth. Showers have been traumatic. The water stung and felt like burning acid on my skin, and it was so agonizing that I would cry and sometimes scream from the pain. I’ve had nerve damage and pain, cold sweats, clamminess, shivering, muscle spasms, swollen lymph nodes, adrenal issues, fatigue, hair loss, and weight loss. I suffered from insomnia and countless sleepless nights. At one point, I had to drop out of college. Mentally and emotionally, I was deteriorating along with my body. I’ve been severely depressed and anxious and have PTSD from what I’ve been through. I struggled with suicidal thoughts and ideations. I was housebound at times. I isolated myself a lot because the thought of people seeing me like this was terrifying. I couldn’t recognize myself in the mirror at all. I developed fears of everything and the potential pain it could cause me. And for a long time, I had lost all hope. But now I’m fighting to hold onto it, even just a little of it.

On average, it takes between 2-5 years for someone to heal from TSW. But there are some people who take even longer - myself included. And as disabling as this condition is, it is not considered a disability, so I am not eligible for any financial assistance. TSW has made it difficult for me to work and have a steady income of my own, and I have struggled a lot financially.

For years I have sought after a more natural and holistic approach to my healing, as conventional medicine never got to the root of the original issue, and I was only given band-aid solutions that worsened my health.

I am determined to get the right treatment, and I am humbly asking for any help to afford and cover expenses in my recovery journey ❤️‍

This will include sessions with a naturopathic practitioner who specializes in TSW, lab tests, herbal medicines, safe skincare products, and foods and supplements and things to support my body’s healing.

I would be extremely grateful for any amount you have in your heart to give! If you are unable to donate, please share this with anyone who might be able to and to also spread awareness for TSW ❤️

I thank you with all my heart for taking the time to read about my journey and helping people like me be seen and heard!

Please note: Though I should’ve taken more pictures, I don’t really have any photos of myself at my worst in TSW because I was too embarrassed and they were difficult for me to look at. Though my skin has improved through the years, pictures I’ve recently taken (those posted here) don’t capture how painful and hard it is to still deal with.