Support Caroline In Her Journey of Healing from TSW

Hello Family and Friends,

Never in my life did I think I would be making a GoFundMe for myself, nor have I ever shared the extent of this medical information about myself on my Facebook before. This will be a long read, and the pictures are a little graphic of my condition.

If you know me, you know I have struggled with dry skin/eczema since I was 13, and you have probably noticed my hands are usually dry year-round. Whenever I have been asked about my skin, it was always easiest to just say dry skin or eczema, but the real cause of it all started when I had a chemical burn from a paraffin wax at a nail salon. When I was 13 in 2011, my hands got dry during the winter, and my mom had taken me to get my nails done at a salon for Christmas. The nail salon owner noticed my dry hands, and she offered to give me a paraffin wax that would “fix” my hands. She ended up dipping my hands in the paraffin wax 14 times each. I later found out from another salon tech that an adults hands should only be dipped 3-5 times.

My hands, by the next week, got all red, raw, cracked, bleeding,and oozing lymphatic fluid. My parents took me to the doctor who sent me to a dermatologist at Walter Reed. The dermatologists there had never seen a chemical burn as bad as mine and asked if they could take pictures for training medical students. They then prescribed me steroid ointment which, at the beginning, really did nothing and just burned and stung when it touched my hands because of how many open wounds were all over both of my hands.

My skin eventually (eventually being months and months) healed from the burn but was still extremely red, cracked and dry. It hurt to move, and I was super embarrassed to have my hands visible. I was a ballet dancer, as most of you know, and everyone would always ask me what was wrong or point out that my hands were bleeding slightly.

Eventually, the steroids started to work, and then I'd run out, and it would flare back up again. My hands never ever got completely back to normal on steroids, though; they would always flare up again before reaching a normal-ish look. Eventually, the “eczema” started to spread to my arms, then my face, my neck, and parts of my face super badly. When I was 15, I would go to the dermatologist, and they would give me 2 or 3 GIANT tubs of steroid ointment that would last me 2-3 months each.

I now know you are not supposed to use steroids for longer than 4 weeks. My body would start going through Topical Steroid Withdrawal (TSW) I just wasn't aware that's what it was, I thought it was just a super bad flare.

I would panic if I ran out of ointment before a big event like my quinceanera or prom. I remember when I went to prom, I barely got my prescription in time to stop my flare-up. This continued for almost 10 years in total.

Eventually, by age 21, I switched dermatologists because of an insurance change, and this dermatologist made it worse by prescribing me antibiotics every single month for almost a full year. She kept prescribing them, but I stopped taking them after I found out that having antibiotics all the time makes your “eczema” worse, infections would come back stronger, and it ruins your gut health.

By age 22, I had heard of TSWS and knew that I probably had it. I was just avoiding starting the process because, from what I had researched, my life was going to get really difficult once I started it. Around December 18th, 2020, I still used the tiniest bit of steroid ointment on my upper lip and eyelids when they flared. I completely stopped using steroid ointment on January 18th, 2021.

What is TSWS?

“Topical Steroid Withdrawal Syndrome is characterized by red, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments. Topical steroids are effective for a period of time to treat the skin condition. As time passes, however, applying topical steroids results in less and less clearing. The original problem escalates as it spreads to other areas of the body. This “progression” is often mistaken for worsening eczema, contact dermatitis, an infection, or an allergic reaction. However, a cluster of non-skin-related symptoms also emerges, constituting a syndrome — not solely a skin condition. TSW Syndrome comes with severe secondary complications, requiring multiple daily interventions for a protracted period of time. Many sufferers are bedridden and housebound for months to years before symptoms abate.

TSW Syndrome is an iatrogenic condition, which means it is a condition caused inadvertently by a medical treatment. Not everyone who uses topical steroids will develop TSW. It is unclear why some individuals experience TSW secondary to topical steroid therapy and why others do not.”

Symptoms (I experienced all of the ones listed below)

• Burning, stinging, or painful skin

• Skin sensitivity to sunlight

• Redness, or rash on the arms or legs, also known as "red sleeve"

• Itching

• Peeling, cracking, or flaking

• Swelling

• Infection

• Pus-filled bumps

• Nodules under the skin

• Thickened, wrinkled skin ("elephant wrinkles")

• Trouble sleeping

• Fatigue

• Hair loss

• Shivering

• Tiredness

• Depression

When I decided to stop steroid ointment, it was in the midst of Covid lockdown, and that helped me with being able to stay home and not have anyone besides my immediate family see me in the condition I was in. Laura and Rebecca (my sisters) would help me get dressed and wash my hair for me (they are the best❤️). Laura would massage my back to help my lymphatic system drain; she would massage sometimes until I fell asleep, which was so nice of her ❤️. My mom would spend hours researching what to do to help me, and what foods could possibly help me with healing my skin.

As I continued the painful healing from the TSW, my skin flared worse than it ever had before, so I wrapped my arms and hands in bandages and wore clothes that covered me from head to toe. Water touching my skin hurt, hot and cold air both hurt, and I couldn’t bend my fingertips, let alone make a fist with my hand; even bending my arms hurt. I remember on Christmas that year, I slept for 20 hours but mustered up the energy to go with my family to Christmas dinner at my aunt's house close by. I couldn’t regulate a normal body temperature - my skin felt like it was burning, but my body was freezing. My mouth got so dry and cracked, I could barely open it to eat without hurting. I lost a lot of hair – thankfully, I have thick hair, so it wasn’t super noticeable to others, but that’s part of the reason I chopped it off super short in 2021. It was just too hard to manage long hair with my painful skin. I also lost the majority of my eyebrows which you’ll see in the pictures I posted.

From January to April of 2021, my final semester of college was the second worst part of my TSW. The first couple weeks of TSW were brutal as I described, and I was thankfully at home for winter break, and my family could help me. When I went back to college, I had to do everything on my own on top of classes. I mostly slept as much as possible and didn’t go to many places. Thankfully, I only ever had one in-person class on Fridays and taught ballet lessons on Zoom due to social distancing until I had to quit my dance teaching position due to my condition. I was able to wash my hair in the sink with dish gloves myself at this point because my arms could now bend without hurting too much. I emailed my professors that year explaining my situation, and all of them let me keep my camera off for Zoom classes, and I could sit in my blankets with ice packs on my skin.

I had my house temp set at 80 degrees in 78-degree weather because I was freezing.

Thankfully, by May, my skin was doing much better, was way less irritated, and starting to clear up a lot. I was able to go to Texas with my roommate Gabbie and have a post-grad trip. The only parts that were super noticeable were my hands, and I was able to hide them in pictures.

Unfortunately, healing with TSW is not linear, and you circle back to experiencing red, itchy skin flares repeatedly throughout the healing process, some are short in length others can last weeks/months.

In January 2023, my skin was not doing well, and dry, cracked skin is much more prone to infection. I ended up needing to go to the emergency room because I had a staph infection on my hands. My heart rate was at 145 when I checked in, and they had me skip the hours-long line because I was experiencing tachycardia. My heart was fine, thankfully - my body was just working super hard to fight the infection. I’ve had three bad staph infections throughout my TSW.

This past May in 2024 I was exposed to mold from an A/C unit my landlord installed. I didn’t realize it for a month. I had a cough and congestion, and my skin was flaring badly. Once I found out it was mold, I went to the doctor, and they prescribed me oral steroids and hydrocortisone ointment, which is not a strong steroid but still dangerous to use for an extended period of time. Oral steroids are just as bad as topical steroids, and you can get TSW from them. I really did not want to take these meds, but (Laura’s) my sister's wedding was very soon, and I wanted the flare-up to be gone by then. I took the steroids hoping that the 5 days worth of steroid use compared to my previous 10 years of use would be okay. Well, it was not, unfortunately, and I’m going through similar symptoms from before - my neck is oozing lymphatic fluid, and my face, arms, and hands are red, dry, and irritated.

I have never stopped going through TSW since 2020, but I have been able to manage it mostly and hide it from being noticeable with makeup and wearing long sleeves to cover my hands. It’s been exhausting, though, and there is no set treatment plan for TSW, as doctors barely started recognizing that it’s a real issue until a couple of years ago. I have spoken with a pharmacist and she told me they only go over topical steroids for one week in pharmacy school. The dangers of being put on topical steroids for an extended period of time are not taught in medical school.

TSW has affected so many aspects of my life: I have not been able to drive some days because I could not fully turn my neck or hold the steering wheel properly because I couldn't bend my fingers; some nights, I have difficulty sleeping because of the bone-deep itch and oozing skin; my eyelids are so dry it hurts to open them, and the list goes on. I’m ready to be done with this being a part of my everyday life.

Recently, I have been hearing more and more positive stories from others in the TSW Community about one treatment that has shown it works, and that is Cold Atmospheric Plasma Treatment (CAP

treatment) . Depending on where people are in their TSW journey timeline wise, CAP treatment either helps patients completely heal from TSW, or it helps accelerate their healing timeline and only dealing with small more manageable flares after treatment. It also helps if you can stay longer to receive treatment however most patients can only go for 4 months.

There are only three clinics in the world that offer it. One is in the UK, another in Singapore, and lastly, Thailand. Thailand was the original clinic where the treatment began, and they have been successfully treating patients with TSW for 17 years.

The one in the UK was started by two TSW patients who received treatment in Thailand. The UK clinic is currently full, and the waitlist is so long that they won’t accept any more patients at this time. They are hoping to expand and be able to take on more clients soon.

I will either go to the UK clinic if they have a slot open up for next year, if that’s not the case I will go to the Thailand clinic (they have a much larger capacity for TSW patients) - the shortest amount of time to go is 4 months, and I really do not want to be away for that long but if it means I get my life back and don’t have to deal with this condition any more than I will do it because 4 months is nothing compared to years of more withdrawal symptoms.

Many people who go through TSW take 6 - 10+ years to heal, and I’m currently in year 3.

I’m hoping to go at the end of May 2025. I will need to quit my job, which I absolutely love, and move my things back to VA (I am very happy about moving back to VA, though). I plan to continue in the childcare field when I am back and get certified as a pediatric sleep consultant online during my time away so that I can add that to my resume when I get back.

Ideally I need to put aside 30k - 40k for this to happen next year in May. Apart from the gofundme, I hope to save up 10k - 20k on my own for the treatment and living expenses while I’m away.

The money from the GoFundMe would go directly towards the treatment and living expenses, either in the UK or Thailand. Anything helps, prayers are very welcome, and thank you so much for taking the time to read this far.

“Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus” - 1 Thessalonians 5:16 - 18