Neurodermatitis: how to live with the disease

People are staring at me. They really stare. I'm getting hot. It itches all over, I just have to scratch myself. Aaah, better. Shit, it's bleeding again on the wrist. Another stop. I look down. I alternately push my knees through and tighten my thighs – left, right, left, right. Almost done. We drive into the station. Just get out of here.

Like a mosquito bite all over your body

Neurodermatitis is diverse. Again and again one wonders: "It looks very different than usual?" This time small, red spots on the thighs. So back to the dermatologist. "Yes, it can look like this. Take cream A every two days and cream B once a week." In fact, the spots have disappeared over time.

But at some point I roll around again at night. The best way to compare itching to a mosquito bite. Only on the whole body. Or always in the same places. You don't know how to help yourself, so you scratch – and scratch and scratch. Even though there are aids. But when you lie awake and the itching dominates everything, the brain is forgetful. After such nights, concentration is not possible. I just can't go to work – so I go to the doctor.

Skin is like being replaced

Today, almost three years later, I feel better "in my skin". This required several steps: I switched to another area of ​​my company and started creative writing to compensate. And I participated in a neurodermatitis study with a relatively new therapeutic approach. The condition of my skin no longer rules everything. It almost looks like a replacement. Meanwhile, I also know that most people in the S-Bahn are concerned with their own problems and that I'm not being stared at all the time.

But the neurodermatitis will continue to accompany me. Even in good phases, I will take time to care for my skin and have to be careful. I now realize how important it is to estimate these phases, because worse ones are coming again.

"Help is not healing"

Dermatologist Professor Regina Fölster-Holst from the University Hospital Kiel on the influence of the psyche and new drugs.

BRIGITTE: What goes wrong with people with neurodermatitis?

Prof. Dr. Regina Fölster-Holst: On the one hand, the epidermal barrier, i.e. the wall of our skin that protects us from the outside, does not function properly genetically. On the other hand, the immune system is on the ceiling, so to speak, and does what it wants. Both are also the case with hay fever or food allergies. Nevertheless, eczema is much more than an allergy. The skin not only reacts to allergens, but also to irritants such as soap.

What are the risk factors?

In addition to the genetic, these are also environmental factors such as pollutants.

What influence does the psyche have?

It always remains an important factor – no matter how good the medication is. You have to be at peace with yourself and accept the disease. Of course, that doesn't mean that you always have to suffer. The disease is easy to treat.

How?

The basis of therapy is creaming. Those who do this consistently need less cortisone and other medication. There is also the avoidance of triggers and, what is even more fundamental: knowledge. Because only if I really know my way around can I become the manager of my illness. Atopic dermatitis training courses in which doctors, nutritionists and psychologists participate have been shown to have positive effects. They are available for parents of affected children, but also for older children and adults. Unfortunately not all health insurance companies pay yet.

Most people think of cortisone during treatment …

And many have big fears about it. It is an endogenous substance that, when used externally, does not cause any problems at all. Unfortunately, cortisone is still widely used in the form of tablets. This is completely unnecessary and provokes that it will get worse after weaning. We have formulated in the guidelines that systemic cortisone therapy should remain an absolute exception.

What is there besides cortisone?

Very effective new means. So far, they have been approved from the age of 12, but studies are currently underway on younger children. The drugs intervene in the pathogenetic process and practically bring the immune system down from its overactivity. They are injected under the skin every 14 days. More substances from this class are currently in the test phase and the first results are promising. You can give hope.

Can you help everyone affected today?

Help yes, but not cure. That is always confused. Even if the treatment succeeds in such a way that the skin looks inconspicuous – the genes cannot be changed.

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