About three children a year are born with a rare condition, epidermolysis bullosa congenita (Butterfly Wing Disease). “Their skin is so fragile that any wrong touch can harm people with this disease.” explains Bleska Magda Hrudkova, founder of DEBRA ČR.

That’s why DEBRA has teamed up with the Simo Kiyonkova Foundation (NFSK), which Shine writes about in the Heart for You project, to create special educatiol videos. This is done so that medical workers, of whom there are more than 200,000 in the Czech Republic, know what to do and how to do it. Even if they have the appropriate education, due to the small number of such patients, they will meet with them at least during their professiol career. Due to a genetic defect, the skin of patients does not hold together.

“Even slight pressure or friction can damage the skin. This, of course, also applies to any manipulations with the patient, which are necessary from time to time in the case of various medical manipulations. explains Magda Khrudkova. Video can prevent many unnecessary injuries and pain.

What is this video?

DEBRA ČR, with the support of the Simo Kiyonkova Foundation, creates 10 educatiol videos in which specialists from a highly regarded specialized EB clinical center demonstrate on their own patients how to adapt a relatively common procedure so that it is performed correctly and at the same time carefully. .

This is not only about blood sampling, where great attention is also paid to how the patient should be prepared at home, but also about dental treatment, basic dermatological treatment or how to safely perform the so-called Holter ECG monitoring on the patient.

Two experiences

The little girl’s hand was skinned!

Magda Khrudkova told Bleska about a case in which medical staff ignored a parent’s warning that their little girl had a butterfly wing disease. “Parents tried to inform medical workers, but their advice was not heeded,” says Grudkova.

“Actually, it was just a blood draw. Parents warned that the use of a rubber band was out of the question. As a result, the skin on part of the arm was torn off.” he describes by saying that the treatment lasted several weeks. “Most of all, it was very painful,” reserves.

When doctors advised…

A patient from western Bohemia has a positive experience with the video guide. It was prepared by specialists from the Clinical Center for EB at the Brno Medical Center, and she showed it to them. It was a video instruction on how to prepare her for surgery. “Thanks to the video, for the first time I left the hospital with no more defects than I came in.” patient describes.

“With my diagnosis, it is always scary to go to a doctor, except for a knowledgeable one. But with such experience, it was enough for doctors to get advice, even in the form of a video,” he remembers. “Their approach and in general the whole process was completely different than it sometimes happens,” adds a woman with butterfly wing disease.

What is Butterfly Wing Disease?

This rare congenital skin disease is epidermolysis bullosa congenita, the so-called butterfly wing disease. The disease is painful and can lead to disability, disfigurement and early death. Manifested by extremely sensitive skin, vulnerable to even the lightest contact. It also affects the eyes, mouth, throat and other interl organs. No cure has yet been found.

They also think about prevention

Some of the videos also focus on preventing complications that can occur with butterfly wing disease, as well as basic information about the importance of genetic counseling. They also summarize what services DEBRA ČR provides to patients and their families.

Simo Kiyonkova Foundation Foundation

Who do they support?

The Simo Kiyonkova Charitable Foundation was officially launched at the end of March last year and has since received over 100 applications. It focuses on supporting non-profit organizations within the established three pillars of support. “It’s about low-income children, single parents, and technology that makes life easier for people in need.” describes director Barbora Bakhmeirova.

Organizations can apply to support their projects on an ongoing basis. The Fund has an open application system. Additiol information can be found on the website: www.nfsk.cz

You can help too!

The Simo Kiyonkova Foundation Foundation helps where it is needed. You can help with it! Simply send any dotion to the public collection’s account number: 253 726 0100/2600. Every penny helps!

Contact: Simo Kiyonkova Foundation Foundation

Address: Českomoravska 2408/1a, 190 00 Prague 9

Website: www.nfsk.cz

Email: [email protected]

Databox: ewh57cw