This is a very informative video on the Overview of TSW which was created by Dr Heba Khaled, a dentist with degree in Biomedical Science, who is also a TSW Warrior.
Please click here to watch it in Korean language.
On our first visit to Skin Health Centre, Dr Jay checked what steroids (스테로이드) we were using. I showed him some of the steroid creams and was proud to tell him that she's actually using Protopic for her face which was not Steroid. Then also had Dupilumab (듀피젠트) injections for 5 months.
He told us that even though Protopic (프로토픽) is not a steroid, the side effect is worse and will cause her to suffer more withdrawal symptoms than steroids! The whole world was just collapsing in front of my face! Everything is so wrong! We thought that they are much better and safer than using steroid... It's as if we paid so much money to get her to suffer from all the withdrawal symptoms instead of benefiting her.
It was really discouraging when Dr Jay listed down all the withdrawal symptoms that my daughter will be going through from steroids, Protopic & Dupilumab.
We contributed photos in the above video as her whole body from head to toes (except her nose only) were affected in extreme conditions as following:
* Atrophy / Elephant Wrinkles / 코끼리피부동반 (9:05)
* Exaggerating Flaking Skin / 건조 탈각현상 (9:34)
At first we're uneasy because of her flaking skin as everyday the whole bed, sofa and floor covered with her skin. Dr Jay told us that we should worry if there's no flaking! Flaking is a good sign as her body still can generate new skin.
* Hyperpigmentation / 색소침착 (12:58)
* Oozing exudation / 진물 동반한 발진
We really thankful to find information on NMT (No Moisturizing Treatment). It really helped to minimize the oozing on her whole body.
* Edema / 부종
* Urticaria (Hives) / 두드러기
* Cradle Cap / 크래들 캡
It's not stop on the skin only, but TSW (탈스테로이드 증후군) also go deep down inside the nerve...
* Shivering & Jerking
After all the above, I do agreed with Dr Heba's conclusion. I won't visit Doctors or Dermatologist for her TSW. It's much better to get information from the support group as they're the real people suffering from TSW and finally recovered...
Well, I know you all care, but sorry that really doesn't work as it's not eczema (as stated on the above). Please also don't ask me to try this or that, eat this or that as if I didn't do my best to take care my daughter.
We tried to control her diet but please understand that it's impossible to give 100% vegetarian. We don't appreciate artificial meats that have gluten or additives in them. She requires a lot of protein and collagen to regenerate as her skin is flaking 24 hours per day.
Please also don't ask to apply moisturizer as you think her skin is extremely dry. We actually purposely to make it dry because all these while we thought that moisturizer will help, but actually it make the skin harden and thicken skin which is more difficult to treat.
Your prayers are more appreciated as they help more than everything else. Thank you.
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