CINOGY: Clara, describe yourself briefly. What do you like to do? What are your hobbies? Do you have a life motto?
My name is Clara, I am 22 years old and have been living with the rare skin disease epidermolysis bullosa dystrophica (EBD), also known as 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 I also work in the social media department of a manufacturer of dressing products (Dr Ausbüttel & Co. GmbH).
My favourite hobby is therapeutic riding. I’ve been riding for over 17 years now and I love sitting on a horse because I can forget everything for a short moment. Riding also strengthens my back and builds up my muscles.
My other hobbies are drawing and my Instagram account @schmetterlingclara. There I want to raise awareness about my condition and share my experiences with other sufferers. I take my followers with me 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 lead a relatively normal life. I went to a normal school (with a school companion) and had lots of friends. Even back then, the bandages had to be changed every day, but they were simply 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 journeys.
As my fingers have grown together, I need help with some things, such as opening packaging or opening bottles. However, I have found a good solution for many challenges, such as a small ribbon on the zip to open and close bags and jackets, so that I can manage some things without help.
I’ve been feeling much worse since 2016. I gradually developed more and more wounds and much more pain. Changing dressings became more and more time-consuming and more painful. I am no longer as fit as I used to be. I suffered severe septicaemia in 2019 due to germs that got into my blood through the many and large wounds. After that, I first had to learn how to walk properly again. Today, I’m always dependent on a wheelchair outside the house, which of course restricts me a lot more. Changing dressings now takes up the whole morning. I also need help with smaller everyday things more often. I am now always dependent on strong painkillers. All of 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 use?
In addition to 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 your daily life?
PlasmaDerm has had a positive influence on my wound healing. The wounds heal much faster and usually without crusty edges. It hasn’t changed much in my everyday life. Only the dressing changes take a little longer when using PlasmaDerm.
If individual wounds heal more quickly as a result of 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 told my parents and me about it. The programme mentioned the University of Rostock and the University of Greifswald as contacts. The dermatological clinic at the University of Rostock gave us the tip to contact the company CINOGY.
CINOGY: Is there anything you would advise other EB patients to do?
It helps me to place a wound mesh between the spacer and the wound during PlasmaDerm treatment. This makes the treatment much more comfortable and pain-free. I also no longer use any ointment on the wound after treatment with PlasmaDerm, just a wound mesh, a wound dressing and a bandage to keep it in place.
Of course, PlasmaDerm cannot cure the disease itself, it can only accelerate wound healing somewhat.
You can find more information about the therapy package and its application here.