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Patient story epidermolysis bullosa (EB), the so-called butterfly disease

Das Leben mit Epidermolysis bullosa 

CINOGY: Clara, describe yourself briefly. What do you like to do? What are your hobbies? Do you have a motto in life?

My name is Clara, I am 22 years old and have been living with the rare skin disease epidermolysis bullosa dystrophica (EBD) or butterfly disease since birth. Butterfly disease comes from the fact that my skin is as sensitive as a butterfly’s wings.

Since the beginning of June, I have been studying communication design at the IU Distance Learning University, and on the side I work for a bandage manufacturer (Dr. Ausbüttel & Co. GmbH) in the social media area.

My biggest hobby is therapeutic riding. I have been riding for over 17 years now and I love sitting on the horse, because during this time I can forget everything for a short moment. Riding also strengthens my back and my muscles.

My other hobbies are drawing and my Instagram account @schmetterlingclara. There I would like to educate people about my disease and exchange information with other sufferers. I take my followers through my everyday life and show them my life with EB.

The motto that applies to me the most is: “Live in the here and now, because you can’t change the past and you can’t predict the future.


CINOGY: How has EB limited your life?

I used to be able to live a relatively normal life. I went to a normal school (with a school companion) and had many friends. Even then, the bandages had to be changed every day, but they were just part of my life and were much shorter and less painful than they are today. . I was relatively good on my feet and only needed a wheelchair for long distances.

Since my fingers have grown together, I need help with some things like opening packages or opening bottles. However, I have found a good solution for many challenges, such as a ribbon on the zip to open and close bags and jackets, so I can manage some things without help.

Since 2016, I have been much worse. I gradually got more and more wounds and significantly more pain. The dressing changes became more and more time-consuming and involved more pain. I am not as fit as I used to be.  Due to germs that got into the blood through the many and large wounds, I suffered severe sepsis in 2019. After that, I first had to learn how to walk again properly. Today, I am always dependent on a wheelchair outside the house, which of course restricts me considerably more. The dressing changes now take up the entire morning. Since then, I also need assistance with smaller everyday things more often. I am now always dependent on strong painkillers. All this affects my everyday life a lot and unfortunately I am no longer as independent as I used to be.


CINOGY: What other therapies do you do?

Besides my riding therapy, my physiotherapist comes to my home 1-2 times a week.


CINOGY: How has PlasmaDerm influenced wound healing and what has changed in daily life?

PlasmaDerm has had a positive influence on my wound healing. The wounds heal much faster and usually without crusty edges. It has not changed much in my daily life. Only the dressing change takes a little longer when using PlasmaDerm.

If individual wounds heal faster due to treatment with PlasmaDerm, I naturally have a little less pain at times. However, new wounds keep appearing and the whole process starts all over again.


CINOGY: How did you find out about PlasmaDerm?

An acquaintance saw a report about PlasmaDerm on NDR and brought it to the attention of my parents and me. The programme mentioned the University of Rostock and the University of Greifswald as contact persons. We got the tip from the skin clinic of the University of Rostock to contact the company CINOGY.


CINOGY: Is there anything you would advise other EB patients to do?

It helps me to put a wound mesh between the spacer and the wound during PlasmaDerm treatment. This makes the treatment much more comfortable and painless. Also, after treatment with PlasmaDerm, I no longer use ointment on the wound, but only a wound grid, a wound dressing and a bandage to hold it in place.

Of course, PlasmaDerm cannot cure the disease itself, only slightly accelerate the healing of wounds.


You can find more information about the therapy package and its application here.

Epidermolysis bullosa

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