Topical Steroid Withdrawal - CAP Therapy Thailand

Dear friends and family,

As many of you know, I have been struggling with a condition called Topical Steroid Withdrawal/Steroid Addiction (TSW) for over a year and a half now. TSW is caused by the terrible side effects of topical steroids/corticosteroids used to treat eczema and other skin conditions. They are often over-prescribed by doctors/dermatologists to anyone with minor rashes, even to children and infants. Unfortunately, there is not enough focus on maintenance consultations and instead, prescriptions are renewed in many cases without control. Unfortunately, I have been on these creams on/off since I was just a few months old. Despite the serious side effects of these medications, many doctors are largely unaware of TSW. Many deny its existence and even insist on prescribing more steroids to those already suffering. This also includes doctors and dermatologists in Denmark and Greenland, where I live. Because of this, many of us with TSW feel unseen and unheard when we are in severe pain and desperate for help. Some with TSW suffer for decades. Some eventually lose hope. Some do not recover from TSW due to the large amounts of steroids they have used.

Symptoms of TSW can be disabling for those who suffer from it and can last for years without an end in sight. The signature of TSW is a red body with burning, dry, flaky, oozing skin that itches incessantly 24 hours a day. Other symptoms include insomnia, muscle spasms, nerve pain, loss of temperature regulation, hair loss, depression, anxiety, edema, vision disturbances, and much more. It can become so debilitating that many become unable to work and become dependent on their families for care and support. It can end relationships and careers and take away life and happiness from those with TSW.

Unfortunately, there is no cure for TSW, and it is unfortunately understudied by medical science. There is no standard treatment, and lotions and creams do not help heal TSW skin as the damage to the skin is deeper than what creams are intended for (applying cream to TSW skin can therefore lead to thickened skin as a protective mechanism and will thereby prolong the healing process). Time is said to be the only healer for this condition, but the amount of time varies from person to person.

A small part of my story

In may 2022, I became pregnant with my beautiful daughter Nora. May 2022 would also prove to be the year and month when I disappeared from the surface of the earth. I had never imagined in my wildest fantasy that my first pregnancy would be the start of the worst period of my life as I tried to stop using steroid creams for the treatment of my "eczema". What should have been a bubble of love and happiness instead became pure torture. Not just for me, but also for my closets ones. The word "torture" can't even begin to describe what I've been through in the last 17 months.

In my case, I lost EVERYTHING except for my daughter and experienced all the symptoms as mentioned above and more. I have been unable to work since august 2022. I lost my partner and the father of Nora, who should have been my future family. I have gotten a broken relationship with my family, who did their best within their capabilities. I have lost touch with many of my friends because their lives moved on while mine stood still.

I have lived this hellish nightmare for over a year and a half now, having many bedridden days where I questioned how much longer I could stay alive. I have been hospitalized three times with sepsis (blood infection), where I lay like a vegetable in the hospital bed, unable to see, eat, or use the toilet by myself.

Back in october 2022, when I was admitted for the first time after being in Topical Steroid Withdrawal (TSW) for a couple of months, I was heavily pressured and mentally drained by the doctors to accept a high dose of the steroid pill prednisolone for the sake of my baby's health during pregnancy

(without informing me that she could be addicted too and had to continue steroids after birth). In May 2023, my body shut down overnight after tapering off prednisolone. From one day to another, I was unable to be a mother or a partner. Time stood still, and I felt like a zombie. My body swelled up to what felt like double size. My body, especially my face, was one big wound, I was oozing fluid from every inch of my body. I ate through a straw because I couldn't open my mouth, and I couldn't see my little girl, who was only three months old at that time. Never willing to give up, I still refused to give up breastfeeding, so I ended up getting help from family to latch her onto my breast, as I was blind from facial wounds. (The picture below is from my early stage of tsw).

From one day to the next, I was hospitalized again, which meant I was separated from Nora. What shouldn't have happened happened... the feeling of my motherhood being taken away from me, and life has never been the same since. I remember feeling like she was dead.. It's an indescribable feeling where no words fit.

There I lay in the hospital bed, unable to see much or move, starring at the ceiling, day in and day out, imagining and fantasizing about Nora reaching different milestones in life, singing and humming to her, even when she wasn't present because it was the only thing I could think of. Many days, I could hardly even focus on breathing. If it hadn't been for being pregnant and becoming a mother, I don't wanna think about where I would be now.

In late June, I had to stay with my parents, who took care of me and Nora day in and day out. I couldn't be alone in fear of uncontrollable self-harm, tearing my skin apart, especially in my face, which would result in me being unable to see or eat for a few days. I could go several days without sleeping because my body was on alert 24/7, and I had panic attacks that lasted for hours, where I behaved as if I were manic or possessed, with a rocking body, rolling eyes, creepy sounds, and half-sentences that made no sense. Several times a day, my parents forcefully held me down, especially my hands, while the other massaged my feet or hands to calm me down so I wouldn't tear at my wounded skin again while screaming in desperation. I had lost everything, and my only motivation was my daughter... Today, I can see, eat, talk, and walk, but I still can't live life or be there for my daughter to the extent I want for her. Most days is survival day. Some days it's every hour, minute, and sometimes even seconds, surviving with constant itching, panic attacks, pain, and misery, where the only relief is the little sleep I'm now finally able to get at night. Just a month ago, I would be happy if I got 2-3 hours over several days, if I was lucky enough to be exhausted enough to fall asleep.

Never willing to give up, I have been searching online for months to find and try anything that could help, and I have finally found something that has given me hope.

Introducing CAP Therapy

Cold Atmospheric Plasma therapy is a new technology used in the medical field to treat skin wounds by stimulating the production of growth factors in skin cells. It has many promising possibilities, including the treatment of topical steroid withdrawal (TSW). The recovery process throughout the treatment can be very physically demanding on the body, but it can help TSW sufferers regain their health and their lives. I can say that for sure after being in treatment for 3 months with 12 sessions done and really good progress so far.

Currently, there are only 3 clinics in the world that offer Cold Atmospheric Plasma for the treatment of TSW patients. One in the UK, Singapore, and Thailand. The longest-running, most experienced, and most cost-effective clinic is in Bangkok, Thailand. I got in contact with the clinic's owner as well as several current and former patients, all of whom have been incredibly positive and hopeful that I will recover from TSW with the treatment. Since my family and partner eventually became unable to take care of me due to the massive pressure they were under, and the hospital eventually refused to help me further because I continued to refuse steroids, I had to beg Jay, the owner of the clinic in Thailand, to let me come earlier, which he and his team fortunately agreed to. My treatment plan is estimated to be 6-12 months based on my topical steroid cream usage. So I quickly decided I would travel to Thailand to receive treatment and hoped to bring Nora, even though it was challenging. Thankfully, my mother offered to travel with me until I was able to take care of Nora myself, which i now am after 3 months of treatment ♥️

This is where I need your help, dear friends and family. Those who know me well know that one of the worst things I know is to ask for help because I, as a person, always put others before myself. For better or worse, I always help everyone else before myself, but this time I have to ask for help. So I can get my life back and be a mother without fear of relapse.

Between travel, treatment, and accommodation, the bills for this journey are quickly adding up. After 3 months of treatment plus remaining expenses, I have already spent 60,000+ dkk from my own pocket on this journey, and therefore I am seeking to raise 30,000 dollars 210,000 DKK to cover the expenses of the rest of my treatment so i dont have to cancel and be in fear of a rebound, or in best case scenario my whole treatment so i can use the 60,000 dkk on my future with Nora.

Here is the breakdown of expenses I have:

Thankfully, the costs in Thailand are very low, so any donation will go a long way. The more I can gather, the more treatments I can receive, and the better the prospects for recovering from TSW.

If I have ever made a positive impact on your life, it would mean the world to me if you could support my journey to regain my health and my life. Some would say it was meant to be for me to go through this journey so I can bring awareness to this terrible condition. I hope that by remaining vocal, open, and sharing my journey, I can help others avoid the same fate. And for those already in a similar situation, I may be able to provide some hope. I wish there would be more research done on TSW, and in that regard, I would be more than happy to contribute my experiences to science. That's why I have also dedicated an Instagram account to document my journey - please read my story at: TSW_Greenland.

I look forward to the day when I can return to doing the things I love, with the people I love. And most of all, I can't wait to become the mother I envisioned to be in May 2022 and do my best to improve the lives of those around me.

Thank you from the bottom of my heart if you read this far!