The role of DEBRA and regional associations in Brazil, a continental country. Dra. Jeanine Magno Dermatopediatrist DEBRA Brasil (president)

Transcription

1 The role of DEBRA and regional associations in Brazil, a continental country Dra. Jeanine Magno Dermatopediatrist DEBRA Brasil (president)

2 BRAZIL AND OTHER COUNTRIES (comparison chart) TOTAL AREA POPULATION BRAZIL 8,515,767 km 2 209,129,000 JAPAN 377,972 km 2 126,672,000 UNITED KINGDOM 242,495 km 2 66,040,229 BELGIUM 30,528 km 2 11,358,357 AUSTRIA 83,879 km 2 8,823,054 BRAZIL SWITZERLAND 41,285 km 2 8,401,120 NEW ZEALAND 268,021 km 2 4,897,960 UNITED KINGDOM BELGIUM AUSTRIA SWITZERLAND JAPAN NEW ZEALAND 02 - The role of DEBRA and regional associations in Brazil, a continental country

3 Neil Palmer/CIAT - CIFOR John Patzer Artur Warchavchik Vitor Pamplona Fotos GOVBA Leandro Macedo Gonçalves Thiago Melo BRAZIL AND ITS DIVERSITY A BEAUTIFUL COUNTRY Iguassu Waterfall - Paraná Fernando de Noronha, Pernambuco São Paulo Ouro Preto, Minas Gerais Blumenau Santa Catarina Rio de Janeiro Bahia Distrito Federal - Brasília Camucim - Ceará Amazon Rain Forest Beco do Batman - São Paulo Lençóis - Maranhão 03 - The role of DEBRA and regional associations in Brazil, a continental country

4 João Lima MAIN PROBLEMS IN BRAZIL POVERTY FIGHT FOR PRODUCTS RURAL AREA LACK OF INFORMATION Many families live in precarious conditions and can barely provide the basics, let alone take care of a child with EB. Many people also live near open sewage which can be a source of contamination and infection. Many parts of Brazil are very hot, which can aggravate the skin condition, but it would be impossible for a modest family to provide an air conditioned environment for their child. Bandages for EB are very expensive and families cannot afford it and parents have to fight in court to receive it. There is also delay and some parents resort to recycling their bandages, with the patient risking getting an infection. In severe cases of EB the monthly costs for wound care treatment can be over 9,000 (minimum wage is 202) In a vast country like Brazil, finding the care for someone living with EB can be quite challenging. Patients who live in rural areas must travel many hours in order to find a doctor. Some of them will have to travel by air as there are not many hospitals that can provide treatment for them. Few people and health professionals know about EB and this lack of awareness has cost the lives of many infants. The number of professionals with experience in EB is extremely few and there are no hospitals which can be a center of referrals in Brazil The role of DEBRA and regional associations in Brazil, a continental country

5 REGIONAL ASSOCIATIONS AMAPEB (MARANHÃO) APIPEB (TERESINA, PIAUÍ) REGIONAL ASSOCIATIONS (11) SUPPORTING TEAM (3) (JOÃO PESSOA, PARAÍBA) NO REPRESENTATION (12) AEB-PE (RECIFE, PERNAMBUCO) AFAPEB BA (SALVADOR, BAHIA) ALAPEB (MANAUS, AMAZONAS) APPEB (DISTRITO FEDERAL, BRASÍLIA) (CAMPO GRANDE, MATO GROSSO DO SUL (VILA VELHA, ESPÍRITO SANTO) AMPAPEB (BELO HORIZONTE, MINAS GERAIS) APPAPEB (CURITIBA, PARANÁ) AEBERJ (NITÉROI, RIO DE JANEIRO) ACPAPEB (BLUMENAU, SANTA CATARINA) AAPEB SÃO PAULO, SÃO PAULO 05 - The role of DEBRA and regional associations in Brazil, a continental country

6 OUR WORK NATIONAL EB PATIENTS REGISTRY 817 patients with EB registered in BRAZIL The national registry is important so we can work with official numbers to fight for the rights of EB patients in the public health system. BIRTH TOTAL DEATH DEATH OF A NEWBORN The role of DEBRA and regional associations in Brazil, a continental country

7 OUR WORK EB AWARENESS WEEK (SHOW YOUR SEAMS) Photo credits: Facebook reproduction 07 - The role of DEBRA and regional associations in Brazil, a continental country

8 OUR WORK EB AWARENESS WEEK (SHOW YOUR SEAMS - DEBRA UK) support from celebrities and influential people Photo credits: Facebook reproduction BIQUINI CAVADÃO DÉBORA COLKER PRISCILA HADDAD ROSÂNGELA MORO ÉRCIO KRIEK SANTOS FOOTBALL CLUB SANTOS FOOTBALL CLUB SANTOS FOOTBALL CLUB SANTOS FOOTBALL CLUB 08 - The role of DEBRA and regional associations in Brazil, a continental country

9 OUR WORK EB AWARENESS WEEK (distribution of materials) Photo credits: Facebook reproduction 09 - The role of DEBRA and regional associations in Brazil, a continental country

10 OUR WORK EB AWARENESS WEEK (social media campaign) I AM NOT EPIDERMOLYSIS BULLOSA, I HAVE EPIDERMOLYSIS BULLOSA! The main concept was to show how different each person can be and to dismistify common beliefs people have about EB: My parents are not neglecting me; I am not being fussy; I don t have a skin allergy; EB can limit sometimes but it doesn t have to stop me; EB is not contagious; I didn t suffer burns in my body 10 - The role of DEBRA and regional associations in Brazil, a continental country

11 OUR WORK CAMPAIGN WE ARE ALL BUTTERFLIES People living with EB were all called Butterfly Children. This campaign was important to show that there are many types of EB and they are not only children, but teenagers, mothers, students, professionals and they were all different in character. The campaign included a short interview with Q&A 11 - The role of DEBRA and regional associations in Brazil, a continental country

12 OUR WORK SUPPORT OF A NEWBORN SUSPECTED OF EB Initial symptoms Baby arriving at the new Hospital After removing the bandage A.H.L.F, native of São Luís - Maranhão (male) Initial symptoms Blisters and detachment of the skin from birth, located in upper and lower limbs, trunk and face, including mucous membranes. He was initially treated for skin infection Initial Conduct Use of Vaseline gauze, crepe bandages, calibrated orogastric tube, venepuncture, antibiotic therapy and bladder catheter. (standardized material and procedures in the hospital) After 10 days of birth He was transferred to the Hospital Escola de São Luís do Maranhão, due to generalized infection and seizures The new hospital contacted DEBRA Brazil (via web site: Emergency kit was sent along with information about EB, regional association info and wound care dressings. DEBRA Team was in direct contact with the doctors giving information and guidance 5 days after admission to the Hospital: Septic shock and death, 5 days after admission and on the same day that donation of the Emergency Butterfly kit has arrived. Unfortunately when he arrived at the new hospital his condition was very severe Donation from DEBRA Brazil arrived in the morning. Unfortunately the patient passed away in the afternoon 12 - The role of DEBRA and regional associations in Brazil, a continental country

13 OUR WORK SUPPORT OF A NEWBORN SUSPECTED OF EB Initial symptoms Our team providing care and guidance to hospital staff Emergency Kit M.K.S.C, Curitiba - Paraná Initial symptoms Blisters in areas of friction, lesions on the oral mucosa, absence of cutaneous tissue in the lower limbs, and detachment of the skin on the hands and blisters in the cheirodactyls, where the oximeter was placed on his wrist. DEBRA Brasil was contacted after 3 days Our team provided care and guidance to hospital staff, following CPG (Clinical Practice Guidelines) and international standards Emergency kit Non-adherent coatings, developed for each stage of healing, aiming to reduce pain during the exchanges, traumas and prevent infection and sequelae of the wounds. Thanks to this technology, patient s quality of life improved significantly Future DEBRA Brazil president He is now a happy child who is not afraid of jumping and playing around. Future president of DEBRA Brasil 13 - The role of DEBRA and regional associations in Brazil, a continental country

14 OUR WORK KIT BORBOLETINHA (baby butterfly kit) Emergency kit Baby Butterfly Kit helps health professionals with an emergency kit for wound care for a baby born with EB. Usually those products would not be available in the hospital and it can save lives. It also has important information about EB, guidelines, infographics and now we have our butterfly doll to welcome the families Sponsorship We have received a donation from URGO Foundation and the Baby Butterfly Kit was one of actions we had proposed We have also received product donations from other wound care related companies and our goal is to provide a variety of choices for the health care professional to help with the treatment of the baby All companies are welcome to join us in this effort to help families and health care professionals 14 - The role of DEBRA and regional associations in Brazil, a continental country

15 OUR WORK POLITICAL ENGAGEMENT AND PUBLIC HEARING The problems we face: By law every person in Brazil has the right to receive proper care and treatment Wound care products are very expensive and most of them are imported. A normal family would not be able afford the wound care products Families will have to fight in court in order to receive it Some families report delay in receiving their medication There was a discussion about whether the government should pay for the so called high-cost medication, leading to a big campaign in Brazil, organised by the Rare Disease community: STF: MY LIFE HAS NO PRICE! In severe cases of EB, the monthly costs for wound care treatment can be over 9,000 (minimum wage is 202) What we do: We act politically, in the public hearings of the prefecture of São Paulo Rare Diseases Forum discussing health judicialization Dr. Jeanine was invited as a guest speaker to talk about the importance of specialized wound care products for our patients Dr. Jeanine with Sergio Moro and Rosângela Moro 15 - The role of DEBRA and regional associations in Brazil, a continental country

16 OUR WORK EVENTS 16 - The role of DEBRA and regional associations in Brazil, a continental country

17 OUR WORK JOINT EFFORT (Hand Surgery) This year, we held our first hand surgery joint effort, where volunteer orthopedic doctors from Minas Gerais met with the surgery team, anesthetists and nursing volunteers from Espírito Santo showing not only the surgical technique, but also sharing experiences. The result was so extraordinary, it left us filled with mutual enrichment through this joint effort. We plan to expand this experience to other regions in Brazil 17- The role of DEBRA and regional associations in Brazil, a continental country

18 FUTURE PLANS BORBOLETAS DO BRASIL (Butterflies of Brazil BOOK) Suelen Szymanski, a talented photographer, has volunteered to create a photo book with our butterflies and the results are amazing! Our first shooting was done in two cities in the south and the idea is to expand it to other cities in Brazil. We are planning to create a book Borboletas do Brasil, which can be translated as Brazilian Butterflies. The idea is to showcase the stories, lives and families of people living with EB, as well as the stories of the parents who lost a child. We want people to know that behind their wings, they are just like everybody else: people with dreams, stories and challenges. Testimony from teachers, employers, partners will also be included to show that inclusion is possible, we just need to look beyond the skin The role of DEBRA and regional associations in Brazil, a continental country

19 FUTURE PLANS CPGs TRANSLATION WOUND CARE CANCER PAIN ORAL CARE There are 4 Clinical Practice Guidelines available in English and we desperately need to translate them, as many people living with EB are dying because of the lack of information available. Wound Care and Cancer Management are our top priority as this is the main cause of death in Brazil. Currently we are looking for sponsors 18 - The role of DEBRA and regional associations in Brazil, a continental country

20 Thank you DEBRA International for keeping the EB world together