Anyone who hears about the disease epidermolysis bullosa, or EB for short, for the first time wonders: "Butterfly children, what is that??". Here you can learn what the butterfly disease is. We also give you suggestions on how affected people and their families can cope with everyday life with the rare disease and show testimonials from butterfly children.
Butterfly children are real heroes for us, who master their lives with a lot of courage and strength.
What moments make you really happy?
"Moments in which you can also forget the disease for a while. When you are out with friends, for example, or even when you are horseback riding."
Butterfly children: definition
Butterfly children are people who are affected by the skin disease epidermolysis bullosa (EB), a very rare genetic defect. This makes the skin as sensitive as butterfly wings – even a gentle touch or careless movement can result in painful blisters. However: Often affected adolescents identify themselves. Adults no longer use the term butterfly child.
The word butterfly child is also used as a synonym for stillborn babies, also known as star babies. On this page we focus on the disease epidermolysis bullosa. How those affected and their families can lead the best possible life with the disease.
Butterfly children and their symptoms
The butterfly children frequency amounts to approximately 2.000 to 4.700 cases in Germany, so the disease is very rare. The epidermolysis bullosa symptoms are usually recognizable from the birth of the child. Depending on the EB subtype, the development of the butterfly child can be different – the course of the disease can be more or less severe. Symptoms of EB range from mild blistering to permanent injury to the skin and internal organs, so butterfly disease can also lead to death if it is very severe.
Setting an example for rare diseases. Piratoplast participates annually with campaigns on the worldwide Rare Disease Day
Butterfly children: suggestions for your everyday life with EB
Living together with butterfly children: Creating moments of happiness
As a severe, chronic disease, epidermolysis bullosa (EB) affects all areas of everyday life. This does not only concern your butterfly child, but the whole family and also friends. As your child grows older, new challenges keep coming your way. Here you will receive age-appropriate information – for example, on how to continue after the diagnosis and how you can make room for moments of happiness in everyday life. Testimonials from parents can also help you find starting points for overcoming your problems.
Our information for you is based on exchanges with parents of EB-affected children, close coordination with young adults who are themselves affected by EB, discussions with doctors and nursing staff, research on the subject, and cooperation with psychologists.
As complex as the manifestations of the disease epidermolysis bullosa are – as diverse are the experiences in dealing with it. We give you on this page information as well as suggestions and hope to be a small support in your daily life, but we also know that our information can not be equally useful for everyone. For suggestions on your part we are therefore always open and grateful.
We would be very pleased if you would like to contact us on the subject of epidermolysis bullosa – be it your own experiences that you would like to share with us, suggestions on specific topics or tips on other aspects of the complex disease that you would like to pass on. Testimonials from affected individuals often contain the most valuable information!
Hero children and their story
Fixed rituals during dressing changes , singing nursery rhymes or roaring like a lion to bravely confront the pain. Some butterfly children show on Youtube or other media how they cope with their everyday life with the disease. Their core message: to make life with EB as beautiful as possible.
Get to know the stories of other affected people: for example, Hassan the butterfly child and Patrick the butterfly child
Story of butterfly child Jonathan Pitre
Story of butterfly child Hassan
Story of butterfly child Franz
Story of Mario
Butterfly child Nina
"Actually, I don't think the term butterfly child is appropriate for me anymore. I am a strong young woman and I don't want to be called a child anymore"
Meet Nina and learn what living with butterfly disease means to her Watch the video here
Butterfly child life expectancy
Epidermolysis bullosa is a serious disease that affects not only the quality of life, but also the life expectancy of affected individuals. An important factor here is the severity of the EB disease: it has a significant impact on the butterfly children's lifespan. This is how epidermolysis bullosa can be fatal when children have a particularly severe form of the disease. However, if the course is not that severe, the life expectancy of butterfly children is normal.
How old do butterfly children become?
With a disease as severe as epidermolysis bullosa, many wonder: "How long do butterfly children live?"?" Only in rare and particularly severe cases of epidermolysis bullosa can the disease actually cause death in childhood. As a rule, however, those affected have a good life expectancy. Butterfly children become adults. This is due in part to optimized care, which has continued to improve over the years.
All information about butterfly child disease
Epidermolysis bullosa, EB for short, is a rare hereditary disease: there are therefore only a few cases of epidermolysis bullosa in Germany. Because the skin layers of sufferers are not properly connected due to the lack of certain collagens, even mild impacts can cause injury to the skin: Depending on the subtype and severity of the disease, superficial or deep and difficult-to-heal wounds develop. Internal organs and the mucous membranes can also be affected. If you want to understand the cause of the skin disease even better, you can find more information here.
Due to the strong formation of blisters, frequent dressing changes are part of the daily routine of butterfly children. Regular treatment and care of the wounds is usually associated with severe pain. Relief for families can be good care from a caregiver. Also the establishment of a suitable wound care place. The choice of gentle dressing materials plays an important role. Suitable dressings include silicone dressings such as Piratoplast Foam Sensitive. You want to learn more about how you can take away pain from your butterfly child when changing dressings? Here you will find some support.
Currently, scientists are researching a treatment for epidermolysis bullosa: one approach includes gene therapy , which is the use of gene-modified stem cells that are developed into skin grafts and transplanted onto chronic wounds of affected individuals. Genetically modified cells should enable the skin to grow back healthy and free of EB.