{"id":849,"date":"2019-08-03T10:00:06","date_gmt":"2019-08-03T08:00:06","guid":{"rendered":"http:\/\/solkes.com\/?p=849"},"modified":"2020-11-29T11:59:52","modified_gmt":"2020-11-29T09:59:52","slug":"butterfly-skin","status":"publish","type":"post","link":"https:\/\/solkes.com\/en\/leaving-a-mark\/2019\/08\/butterfly-skin\/","title":{"rendered":"Butterfly Skin"},"content":{"rendered":"

T<\/span>here are many kind of deseases that affect people in all parts of the world. One of them is Epidermolysis bullosa, a skin disorder that is genetically transmitted and manifests itself at birth or in the first months of life.<\/p>\n

The desease<\/strong><\/span><\/h3>\n

The skin is filled with blisters, ulcers and wounds, especially in the mucous membranes. This happens with the slightest touch or blow. Internal wounds often appear, causing a closure in the esophagus. In return, this causes a loss of weight because they are not being able to digest food.<\/p>\n

\"\"<\/a>
Fundaci\u00f3n Debra \u00a9 Solkes<\/figcaption><\/figure>\n

The skin of those affected is fragile, weak, extremely sensitive and extremely vulnerable. With the slightest contact the skin is detached, causing wounds and \/ or blisters that look like a big burn.<\/p>\n

Over the past 15-20 years, 13 major genes responsible for the majority of cases of EB have been identified. The genetic errors in EB result in defects in the proteins that adhere the epidermis to the dermis.<\/p>\n

Solkes:<\/span><\/strong> What exactly is Epidermolysis Bullosa?<\/p>\n

Dr. Liliana Consuegra Razzani, director of the Debra Foundation:<\/span><\/strong> It is a rare, genetic, non-contagious disease that involves the formation of blisters and wounds from minimal friction, trauma or friction of the skin and mucous membranes. The cause is genetic, incomplete or absent proteins that fix the layers of collagen in the skin and mucous membranes, generating extreme fragility.<\/p>\n

Solkes:<\/span><\/strong> What is the cure for this illness?<\/p>\n

Dr. Liliana Consuegra Razzani, director of the Debra Foundation:<\/span><\/strong> Until now there are no curative treatments, there are still inconclusive research projects that seek the cure. At the moment, all we have are \u201cmethods\u201d to prevent and treat wounds with very difficult healing throughout life.<\/p>\n

The disease affects people all over the world, men and women. In Colombia there are 60 registered patients in different areas of the country and it is believed that there should be more than 250 cases.<\/p>\n

The work in Colombia<\/span><\/strong><\/h3>\n

While Consuegra Razzani volunteered at Hogares Luz y Vida, a place that welcomes abandoned children in special health conditions, she met 2 little sisters with butterfly skin.<\/p>\n

So, she wanted to look for alternatives to alleviate the pain, and so she found Debra International and then Debra Chile.<\/p>\n

\"\"<\/a>
Fundaci\u00f3n Debra \u00a9 Solkes<\/figcaption><\/figure>\n

After a few months more patients with this extremely rare and painful condition<\/span><\/strong> came to her, looking for a doctor who could answer questions that the health system could not answer or address.<\/p>\n

With this in mind, she had to do a lot of research, training and finding resources to get special dressings that kept clothes from sticking to his skin.<\/span><\/strong> After a few years Debra Chile<\/span><\/strong> asked her to lead the Debra Colombia<\/span><\/strong> project to help relieve Colombian children with this condition and caregivers who were looking for help in Debra from other countries.<\/p>\n

And, since this is such a delicate issue, we gave ourselves the task of talking with people who are dedicated to helping those who suffer from this disease.<\/p>\n

That’s how we came to the Debra Foundation. The foundation is a non-profit organization affiliated with Debra International that provides interdisciplinary and specialized support to patients with epidermolysis bullosa or butterfly skin.<\/p>\n

We had the opportunity to speak with Dr.Liliana Consuegra Razzani who is the director of this foundation in Colombia.<\/p>\n

It is important to note that Debra was created in the United Kingdom in 1978<\/span> <\/strong>by the mother of a girl with this condition called Debra. Subsequently the meaning is established by the initials of Distrofic Epidermolysis Bullose Rare Asociation.<\/p>\n

 <\/p>\n

Relieving pain<\/span><\/strong><\/h3>\n

The purpose of the foundation is clear: to ensure that patients have days with less pain.<\/span><\/strong> This is to be achieved through comprehensive specialized and interdisciplinary medical care programs, school-social inclusion projects, psychological and legal support to guarantee their fundamental rights.<\/p>\n

\"\"<\/a>
Fundaci\u00f3n Debra \u00a9 Solkes<\/figcaption><\/figure>\n

This information left me uneasy because patients not only suffer a terrible illness throughout their lives but are also rejected.<\/p>\n

The truth is that they suffer from social exclusion, from the eyes of people, to the indolence of some doctors who do not give the attention they require or the limitations for access to school and work inclusion.<\/p>\n

Solkes:<\/span><\/strong> What is the importance of the work you do?<\/p>\n

Dr. Liliana Consuegra Razzani, director of the Debra Foundation:<\/span> We make sure health teams, state entities related to health, private companies and individuals become sensitive and support projects that allow days with less pain to patients with a more painful condition that exists and that has no cure. and what is worst tis takes place in a health system that does not know about the treatment of the disease in many aspects (from care to coverage of treatments).<\/p>\n

Solkes:<\/span><\/strong> What is the most difficult thing you have experienced so far?<\/p>\n

Dr. Liliana Consuegra Razzani, director of the Debra Foundation:<\/span><\/strong> Finding that patients get complications or die due to lack of attendance from the health system.<\/p>\n

Working with people affected by this disease is not an easy task but it is full of challenges, tears, laughter and satisfaction.<\/p>\n

\"\"<\/a>
Fundaci\u00f3n Debra \u00a9 Solkes<\/figcaption><\/figure>\n

The first thing they do is train patients, caregivers and health teams to prevent and treat wounds properly. Likewise, the medical requirements (specialized healing material – nutritional supplements) are provided and \/ or we give advice so that the health system of the relevant coverage.<\/p>\n

On the other hand, specialized and interdisciplinary medical attention is given in regional meetings, where patients, parents and caregivers share experiences. Finally, a surgical and intra hospital accompaniment is given to patients who require hospital admissions.<\/p>\n

The reality<\/span><\/strong><\/h3>\n

On legislation issues there are many gaps. It is not ideal. A significant amount of changes must take place.<\/p>\n

It is a fact that the orphan diseases law<\/span><\/strong> exists but has not yet been applied. However, in the last year the Debra Foundation Colombia has achieved joint work with the Health Ministry and the Health Superintendence and little by little we are making progress.<\/p>\n

\"\"<\/a>
Fundaci\u00f3n Debra \u00a9 Solkes<\/figcaption><\/figure>\n

There are major limitations such as the lack of knowledge of health teams about this condition and its treatments.<\/p>\n

On the other hand, the current regulations say that the creams that patients require for treatment are considered “COSMETIC”<\/span><\/strong> and therefore the health system does not cover them. Further more, some bandages that patients require are not in the country and therefore some doctores requests are not covered.<\/p>\n

Solkes:<\/span><\/strong> What are, according to you, some of the biggest problems we have?<\/p>\n

Dr. Liliana Consuegra Razzani, director of the Debra Foundation:<\/span><\/strong> The indolence and ignorance of some doctors, the gaps in the legislation and the lack of resources to guarantee biopsychosocial well-being of patients with butterfly skin in our country.<\/p>\n

 <\/p>\n

The results<\/span><\/strong><\/h3>\n

So far they have been able to support patients with the necessary medical attention, they have provided psychological support and support in school and work inclusion projects.<\/p>\n

Likewise, they have sent kits with healing material and nutritional supplementation. Since 2009, more than 80 patients with this condition in Colombia have benefited from these programs since then.<\/p>\n

\"\"<\/a>
Fundaci\u00f3n Debra \u00a9 Solkes<\/figcaption><\/figure>\n

Although there are many advances, the Foundation is aware that they must do more. And, perhaps what they need most is to make orphan disease legislation effective for patients and caregivers.<\/p>\n

\n

People are needed so we can help. People who provide their time, knowledge and experience for the common good of patients and their families.<\/h4>\n<\/blockquote>\n

I <\/span>conclude this interview with some words that resounded in my heart and mind. The community must avoid judging with looks and having exclusive attitudes that make the pain more intense.<\/span><\/strong> Health teams should look for more information about epidermolysis and try to put themselves in the shoes of patients and their families. Last but not least, the orphan disease legislation must be effective. There is no use in a paper if you can not help those who need it.<\/span><\/strong> It is necessary to support those who suffer from this disease so that they have days of less pain and can have a decent life. It I all about a\u00a0decent life for the most vulnerable.<\/p>\n","protected":false},"excerpt":{"rendered":"

There are many kind of deseases that affect people in all parts of the world. One of them is Epidermolysis bullosa, a skin disorder that is genetically transmitted and manifests itself at birth or in the first months of life. The desease The skin is filled with blisters, ulcers and wounds, especially in the mucous […]<\/p>\n","protected":false},"author":76,"featured_media":1793,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[66],"tags":[1973,801,712,1974],"class_list":["post-849","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-leaving-a-mark","tag-butterfly-skin-en","tag-colombia-en-2","tag-help-en","tag-treatment-en"],"acf":[],"yoast_head":"\nButterfly Skin - Solkes Magazine<\/title>\n<meta name=\"description\" content=\"Butterfly skin is a rare, genetic, non-contagious disease that has no cure. 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Estudi\u00f3 Comunicaci\u00f3n Social con \u00e9nfasis en Periodismo en la Pontificia Universidad Javeriana de Bogot\u00e1, Colombia. Desde muy joven sinti\u00f3 una profunda pasi\u00f3n por contar historias, explorar el mundo y dar voz a quienes no la tienen. Su compromiso con los Derechos Humanos ha sido una constante en su trayectoria, participando activamente en proyectos sociales desde temprana edad. Este inter\u00e9s se refleja en el enfoque editorial de Solkes, una revista que prioriza el periodismo independiente, la diversidad cultural y la profundidad narrativa. Laura naci\u00f3 en Bogot\u00e1, vivi\u00f3 tres a\u00f1os en Madrid, Espa\u00f1a, y desde el verano de 2010 reside en Alemania. Esta experiencia multicultural ha enriquecido su perspectiva y ha sido clave para la creaci\u00f3n de una revista triling\u00fce que trasciende fronteras y conecta a lectores de distintas partes del mundo. ******************************************************************************************* Founder and Editorial Director of Solkes Magazine She is a passionate journalist by vocation and training. She studied Mass Communication with an emphasis on Journalism at the Pontificia Universidad Javeriana in Bogot\u00e1, Colombia. From a young age, she was deeply motivated to tell stories, explore the world, and give a voice to those who often go unheard. Her commitment to Human Rights has been a constant throughout her career, actively participating in social projects since early on. This dedication is reflected in Solkes Magazine\u2019s editorial focus on independent journalism, cultural diversity, and in-depth storytelling. Born in Bogot\u00e1, Laura lived in Madrid, Spain for three years, and has been residing in Germany since the summer of 2010. This multicultural experience has enriched her perspective and played a key role in creating a trilingual magazine that transcends borders and connects readers from around the world. ******************************************************************************************* Gr\u00fcnderin und Chefredakteurin von Solkes Magazine Laura Viera ist eine leidenschaftliche Journalistin aus Berufung und Ausbildung. Sie hat Soziale Kommunikation mit Schwerpunkt Journalismus an der Pontificia Universidad Javeriana in Bogot\u00e1, Kolumbien, studiert. Schon in jungen Jahren war sie stark motiviert, Geschichten zu erz\u00e4hlen, die Welt zu erkunden und denen eine Stimme zu geben, die oft ungeh\u00f6rt bleiben. Ihr Engagement f\u00fcr Menschenrechte begleitet sie seit Beginn ihrer Laufbahn. Sie war von Anfang an aktiv an sozialen Projekten beteiligt. 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Estudi\u00f3 Comunicaci\u00f3n Social con \u00e9nfasis en Periodismo en la Pontificia Universidad Javeriana de Bogot\u00e1, Colombia. Desde muy joven sinti\u00f3 una profunda pasi\u00f3n por contar historias, explorar el mundo y dar voz a quienes no la tienen. Su compromiso con los Derechos Humanos ha sido una constante en su trayectoria, participando activamente en proyectos sociales desde temprana edad. Este inter\u00e9s se refleja en el enfoque editorial de Solkes, una revista que prioriza el periodismo independiente, la diversidad cultural y la profundidad narrativa. Laura naci\u00f3 en Bogot\u00e1, vivi\u00f3 tres a\u00f1os en Madrid, Espa\u00f1a, y desde el verano de 2010 reside en Alemania. Esta experiencia multicultural ha enriquecido su perspectiva y ha sido clave para la creaci\u00f3n de una revista triling\u00fce que trasciende fronteras y conecta a lectores de distintas partes del mundo. ******************************************************************************************* Founder and Editorial Director of Solkes Magazine She is a passionate journalist by vocation and training. She studied Mass Communication with an emphasis on Journalism at the Pontificia Universidad Javeriana in Bogot\u00e1, Colombia. From a young age, she was deeply motivated to tell stories, explore the world, and give a voice to those who often go unheard. Her commitment to Human Rights has been a constant throughout her career, actively participating in social projects since early on. This dedication is reflected in Solkes Magazine\u2019s editorial focus on independent journalism, cultural diversity, and in-depth storytelling. Born in Bogot\u00e1, Laura lived in Madrid, Spain for three years, and has been residing in Germany since the summer of 2010. This multicultural experience has enriched her perspective and played a key role in creating a trilingual magazine that transcends borders and connects readers from around the world. ******************************************************************************************* Gr\u00fcnderin und Chefredakteurin von Solkes Magazine Laura Viera ist eine leidenschaftliche Journalistin aus Berufung und Ausbildung. Sie hat Soziale Kommunikation mit Schwerpunkt Journalismus an der Pontificia Universidad Javeriana in Bogot\u00e1, Kolumbien, studiert. Schon in jungen Jahren war sie stark motiviert, Geschichten zu erz\u00e4hlen, die Welt zu erkunden und denen eine Stimme zu geben, die oft ungeh\u00f6rt bleiben. Ihr Engagement f\u00fcr Menschenrechte begleitet sie seit Beginn ihrer Laufbahn. Sie war von Anfang an aktiv an sozialen Projekten beteiligt. Dieses Engagement spiegelt sich auch im redaktionellen Fokus von Solkes Magazine wider, das unabh\u00e4ngigen Journalismus, kulturelle Vielfalt und tiefgr\u00fcndiges Erz\u00e4hlen in den Vordergrund stellt. Geboren in Bogot\u00e1, lebte Laura drei Jahre in Madrid, Spanien, und lebt seit Sommer 2010 in Deutschland. Diese multikulturelle Erfahrung hat ihre Perspektive bereichert und war entscheidend bei der Gr\u00fcndung eines dreisprachigen Magazins, das Grenzen \u00fcberschreitet und Leser weltweit verbindet.","sameAs":["http:\/\/www.solkes.com"],"url":"https:\/\/solkes.com\/en\/author\/lauraviera2019\/"}]}},"_links":{"self":[{"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/posts\/849","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/users\/76"}],"replies":[{"embeddable":true,"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/comments?post=849"}],"version-history":[{"count":4,"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/posts\/849\/revisions"}],"predecessor-version":[{"id":12453,"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/posts\/849\/revisions\/12453"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/media\/1793"}],"wp:attachment":[{"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/media?parent=849"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/categories?post=849"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/solkes.com\/en\/wp-json\/wp\/v2\/tags?post=849"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}