Help me to continue CAP therapy for TSW
Donation protected
Dear all
As many of you know I have now been living with a debilitating condition called Topical Steroid Withdrawal (TSW) for over a year now. My TSW is a result of the terrible side effects of topical steroids used to treat my life long eczema.
Don’t get me wrong - these medications treated my eczema successfully, until one day they didn’t. Gradually as the skin got used to the steroids the effectiveness reduced, my doctors then increased the prescription, with success, until those medications also become less effective. Eventually even the strongest class of steroids failed to effectively treat the increasing rashes, and then all hell broke loose. Unknowingly my skin had become addicted to the steroids, and as I ceased the medication I plummeted into withdrawal.
TSW can be debilitating and the symptoms can last for years with no end in sight. The signature of TSW is a full body, bright red, burning, dry, flaking, oozing skin that has a bone deep and non stop itch. Other symptoms I have experienced include insomnia, muscle spasms, nerve pain, inability to regulate your own body temperature, hair loss, depression, social isolation and more. It can become so debilitating that many become unable to work and be reliant on family for care and support. It can end relationships and careers, and take away the lives and happiness of those with TSW.
Despite the severe side effects of these medications, many doctors are largely unaware of TSW, or may deny its existence altogether due to the long standing thought that these medications are ‘safe’. 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 can suffer endlessly for years on end. Some eventually lose hope. Some do not make it out of TSW.
Unfortunately, there is no cure for TSW and it is currently understudied by medical science. In Australia our current medical options include immunosuppressant therapies or biologic medications to suppress the symptoms, neither of which actually heal the damaged skin. I did have a course of 6 months of methotrexate in 2021 which was effective for my ‘severe eczema’ but my kidney function plummeted and I could not continue. The biologic medication offered to me also comes with a list of side effects, including vasculitis, eye and vision problems, eczema (ironic right?), and asthma (which I already have).
In mid 2023 I became aware of an emerging technology in the treatment of TSW using Cold Atmospheric Plasma to actively treat the damaged atrophied (thinned) skin. This technology has been used for wound healing for many years. To treat TSW this is a weekly treatment session. Each session promotes an increase in the cellular turnover rate, which has been suppressed by topical steroids (a very well known side effect). With CAP treatment the skin is actively healing the years of damage, leaving the rest of the body alone. There is no medication to upset other organs, the treatment is not painful but it does take time. This technology is not yet available in Australia, it is only available in Thailand, the UK and Singapore with the longest running clinic located in Bangkok Thailand.
In October of 2023 I began self funded CAP therapy treatment in Bangkok where I relocated to for 4 months. I had 16 treatments which where very successful, but for ongoing improvement more is required.
This is where I'm hoping you can help.
This is very hard for me to ask. I am a stubborn, fiercely independent person and asking for help is not something I do easily or take lightly. I have had to search deep within to come to terms with the fact that it is time to reach out and show my pain. Your support will not only benefit me but also my loved ones who care for me and struggle to watch me go through this.
I am hoping for financial donations to enable me to further extend my CAP treatment. Your donation can make a significant impact on my health and well being and reduce the time of overall healing. In my case a life long use (of prescribed topical steroid) has put my skin into a state that will take approximately a further 9 years to repair if just left to time. This is calculated by the amount and classification type of steroids I have used. This ordeal has been and is absolutely horrendous, it has tested me physically and emotionally in ways I never thought possible, and looking ahead to the next 9 years with TSW is something I cannot bare.
It would mean the world to me and my family if you could support my journey of getting my health and my life back. I'm hoping that by remaining vocal and sharing my struggles that I can help others avoid TSW. And if they are already dealing with a similar situation, then maybe I can give them some hope.
I'm looking forward to a day that I can go back to doing the things I love, with the people I love, and do my best to help improve the lives of those around me.
Please feel free to share my story, in the hope that it can help others and prevent this outcome for them.
Thank you for reading my story, from the bottom of my heart.
Karen
For further Information about TSW please visit:
Preventable documentary:
Organizer
Karen Galvin
Organizer
Mornington, VIC