– You sit in a foxhole. Nobody knows what to do. Quite quickly you become doubtful about what you get from healthcare.
In 2019 got Wind, 39, stress rash. Hoping for relief, she contacted a health center where it was assessed that the rash was eczema. She was then prescribed cortisone ointment.
– The only thing they wanted to give was cortisone because they judged the rash to be eczema.
The rash does not go away, even though she lubricates as prescribed by the doctor. A year later, the rash is worse than before and has spread to other parts of the body.
– I got red all over my body, Linda tells News24.
Photo: Private.Photo: Private.”I anointed, it burned and the tears flowed”
After getting a rash around her mouth and eyes, Linda contacts the health care again. Cortisone should not be used on the face. In the hope of relief, Linda is prescribed Protopic. Something that will turn out to worsen the rash.
– Protopic is even worse. I anointed, it burned and the tears flowed. The rash behind the ears started leaking first. You didn’t know where to go.
On December 4, 2020, Linda stopped cortisone. She started calling in sick and was in constant contact with the health center in the hope of improvement.
When Linda then stopped the cortisone, the rash spread even more. What was once a small rash around the armpits spread to the whole body.
During December and January from 2020 to 2021, Linda loses about two-thirds of her hair.
In the end, she turns to the internet for answers.
– They started looking around. I quickly found videos on Youtube about TSW. There I found entire films about the progress of TSW, and thought “My God, that’s me”.
Through social media groups, Linda and others with TSW can seek comfort from each other. There you can share your everyday life in pictures and text, as well as give support to other sufferers.
– You feel less alone, says Linda.
Photo: Private. Photo: Private. The daughter mourned Linda: “She wanted her mother back”
For several periods, the rashes have become so bad and the skin so dry that Linda has been unable to put on clothes. The disease stops Linda from everyday tasks, and instead her husband has to step in.
– These periods when I couldn’t wear clothes or shoes because the skin leaks so much and burns, I can’t drive or pick up the children, participate in their activities, go grocery shopping or other things that require me to leave home.
In connection with the illness, Linda cannot spend time with her children in the same way. She says that the youngest daughter mourned her mother after she became bedridden.
– My youngest daughter was only seven years old when I got this. For the physically good kid who just wants to be hugged and sit with mom, everything became so different. I got so sick that I couldn’t hug and be close. She mourned me. She said she wanted mom back. I can feel a sadness there. I have not been able to be a mother in the way I would have liked. This disease has put an end to that.
– I can feel a sadness there. I have not been able to be a mother in the way I would have liked. This disease has put an end to that.
Topical Steroid Withdrawal difficult to assess in healthcare: “No one listens”
– To this day, the healthcare system never refers to the rash as anything other than eczema. I have never received confirmation from the healthcare system that it is TSW.
Once it was close. When Linda saw a dermatologist after being bedridden in January 2021, the doctor mentioned TSW.
– Then she (the doctor, ed. note) said that most of it sounded like TSW, but that I had too large lymph nodes.
Getting too big lymph nodes can in turn be a consequence of cortisone addiction. Despite this, the dermatologist judged that what Linda was dealing with was undertreated eczema.
– Then I thanked myself. I felt like I had no support there. No one listens to what I say.
Photo: Private. Photo: Private.
Today, Linda still has problems with the rashes. At the latest three weeks ago, the wounds on the face and neck started leaking. She is still on sick leave, now at 50 percent.
– I am far from recovered from my TSW, says Linda and adds:
– Three years ago, I would never have gone out the way I look today. You are dry, red and swollen, but you have learned to live with it.
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