Read the report - DEBRA International

2012
DEBRA COLOMBIA
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COOPERATION BETWEEN DEBRA CHILE AND DEBRA COLOMBIA
Here we are presenting the results of the Cooperation Project between Debra Colombia and Debra
Chile in the III Butterfly Skin Heroes Meeting accomplished in the Frame of the EB Awareness
Week 2012
COOPERATION BETWEEN DEBRA CHILE AND DEBRA COLOMBIA
From October 26th to 29th Debra Colombia accomplished the III Colombian Butterfly Skin
Heroes Meeting. The same that in 2010 and 2011, patients from different places from
Colombia came for special attention, general medicine and wound care, pediatric
dermatology, dentist, psychology and special education. This is a very important meeting
because parents and patients can feel in a weekend that they are not different. In this
opportunity our doctors, patients and parents had a good plus, Debra’s Chile team came
for training and give us their experience for guarantee a better attention for our patients
with EB.
The amount spent, including contributions from other sources:
Travel expenses for food and accommodation for Debra Chile Team
Travel expenses for food and accommodation for EB patients and one
companion for EB patient. Tickets were bought with Miles program
From Avianca, paying taxes
Expenses for the rental of a Medical Center
Expenses for 2 biopsies
Wound care and healing material expenses
Uniforms for patients
Expenses pedagogical and psychological workshops
Magician Show
Kits with: adherent dressings, wound care material, nutritional
supplements for EB patients
Doctors, press, psychology, pedagogy, logistics team and staff.
All they worked as volunteers
Total Expenses
International Cooperation of Luxembourg
Debra International founding
International Cooperation in Financing
€ 4.200
€ 8.364
€ 625
€ 102
€ 2.094
€ 1. 945
€ 787
€ 371
€ 2.955
€0
€21.443
€ 2.316
€ 3.500
€ 5.816
Benefits to patients with EB in Colombia (including appropriate statistics)
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Interdisciplinary and special attention for 39 patients with EB in Colombia (wound
care, dermatology, pediatric, physiatrist, dentistry and general).
Colombian Doctors and EB patients and parents were trained in wound care and
early detection of complications.
Doctors trained:
Liliana Consuegra Bazzani
Maria Angelica Macias
Andrea Salamanca
Carolina Rivera
Hilderman Pedraza
Luis Alfonso Londoño
Carolina Cardona
Md. Ms. Children nutrition, alternative medicine and
general care in EB
Md Phd. Pediatric Dermatology
Md Phd. Pediatric Dermatology
Md. Ms. Genetic
Md. Wound care in EB
Md. alternative medicine and general care in EB
Physiotherapist, trained in EB
Dentist trained:
Celina Patiño
Heidy Vargas
Enrique Medina
Diana Vargas
Eliana Lozada
Pediatric dentist
Dentist
Dentist
Dentist´s student
Dentist
Clinical Diagnosis
Type
Cases
%
EB Simplex
6
15.3%
Junctional EB
2
5,1%
Dystrophic EB
29
74,35%
Kindler Syndrome
1
2,5%
Autoimmune acquired
1
2,5%
Unknown Diagnosis
0
0%
EB and Debra Conferences about:
Genetics – Carolina Rivera (Debra Colombia)
Dental Care- Sussie Karmer (Debra Chile)
Pediatric Care – Maria Joao (Debra Chile)
Wound Care – Ma José Gana- Eugenia Elizalde (Debra Chile)
Physiatrist Care – Matías Orellena (Debra Chile)
Cancer in EB- Francis Palisson (Debra Chile)
Debra Fundamentals – Liliana Consuegra (Debra Colombia)
Dentist and medical team from Debra Colombia was trained for interdisciplinary Debra
Chile team with our patients; two patients had dental extractions, by Sussie Kramer
experience.
How the project can be financed in the future hold
Achievements spreading for National Meetings for EB patients during the years 2010, 2011
and 2012 through: media, social networking and website to raise funds from the private
sector, government and international cooperation or partnership.
Engaging our beneficiaries with mutuality between Debra and families / patients with EB to
apply to the other projects of cooperation.
Ensuring funds to pay professionals committed and interests in comprehensive care of
patients with EB.
Any unexpected benefits or problems that you encounter
Unexpected benefits:
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Press about EB and Debra.
Potential and new sponsors and voluntaries.
We obtained a project with Rosario University for give to our patients and
families with EB genetic advice, and we are working for get resources for
ADN studies.
Project to improve the life quality to our beneficiaries with new wigs, so they
will feel and see well. Right now we have money for 3 wigs and 1 wig is all
ready gave to our patient Jessica, now she is feeling happier and much
better.
Problems that we had encountered
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We had many patients with wrong diagnosis because in Colombia, we
have not inmuno-fluorecence, electronic microscope and staining for
mark basement membrane molecules as collagen 4 and 7 or laminin.
We believed all the time in the biopsies reports for diagnosis, but we can
learn with Debra Chile, that clinical diagnosis going to be better
because we haven´t the technology for a good diagnosis with
histopathology for now.
The dermatology doctors in Colombia do not have enough time to
work as voluntaries.
As a priority we need nurses to be trained in EB working in Debra,
because we do not have any.
Unfortunately we do not have doctors specialized in esophageal
dilations, we have some patients with this complications (Debra Chile
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recommended us to take some RX that still pending to take / so parents
of EB patients have to process the RX by the social security or pay some
extra money for this process).
Since now Debra Colombia do not have the providers of wheelchairs or
splints for patients with EB.
In mutual agreement for the project of International Cooperation of
Luxembourg about 4 EB parents were not involved in the project, as a
result were not successful.
We had problems with sponsors with some private companies, because
they do not want to give the opportunity to other companies to
participated and want all the attention with Debra Colombia in press
during the whole year, as well they do not even participated in our
meetings during the preparation of the annual event.
Some lessons that can be of value to members of groups DEBRA International
Debra International offers the experience and training of less experienced teams in
practice, with reality and sociability in the same language. It is really good to
ensure better patient care in each country. For Debra Colombia we receive from
Debra Chile their training, experience and high quality of human working during 3
days, focused all time to our patients it was really a wonderful experience. ..
Then we only have to say: THANK YOU! DEBRA INTERNATIONAL
Might be of interest
Debra Colombia has to work hard to have the funds to pay health professionals
who are interested in working for people with EB for many years. Here, volunteer
work is not continuing through the time in this area. Fundraising and press then have
to follow a hard work to achieve that goal.
Furthermore, our lawyers have to work to secure the rights for the EB patients.
Photographic Record
First Day- Inauguration
And our children arrived…
Some words from Dr
Consuegra and Dr Palisson
WELCOME ALL OF YOU!
Getting ready for a Great Job!
Dr. Joao in Medical Attention
They received their uniforms,
beautiful Debra Sweat suits…
Now is time for fun…
Lets the music play
Candy space
Second Day- Plenty of Activities
Psychological Conference
Good breakfast to start
SPECIAL ACTIVITIES
Painting
Hard work
Muppets Space
Cooperation
Third Day- Thankful
Dr. Kramer in Action…
Magic Happens
Big team!!!
I’m the Hero, Our Debra Colombia Song
Dr. Orellana Conference
Let Dreams fly
No matter the pain we made
them smile
Links of Publications
III COLOMBIAN BUTTERFLY SKIN HEROES MEETING
Televisión:
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ET Channel
City TV
HSB- pendiente emisión
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Emisora 1430
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Q´Hubo
Radio:
Prensa:
Web:
La gran noticia
http://www.lagrannoticia.com/salud/8994-en-16-departamentos-de-colombia-45-ninos-conqpiel-de-cristalq-viven-su-drama-y-su-dolor
Radio Santa Fe
http://www.radiosantafe.com/2012/10/26/ong-realizara-encuentro-para-pacientes-con-piel-decristal/
Soy Periodista
http://www.soyperiodista.com/noticias/nota-16245-iii-encuentro-nacional-de-heroes-piel-decristal
Federación colombiana de enfermedades raras
http://www.fecoer.org/iii-encuentro-nacional-de-heroes-con-piel-de-cristal/
elcolbot
http://apps.gkudos.com/news/2012/10/09/236814/iii-encuentro-de-heroes-con-piel-de-cristalen-bogota/
Grupo argentino de ayuda al paciente con enfermedades raras
http://gadaper.blogspot.com/2012/10/iii-encuentro-nacional-de-heroes-con.html
Japon NV
http://japon.nacionvirtual.com/iii-encuentro-de-heroes-con-piel-de-cristal-en-bogota/
Noticias 999
http://noticias999.com/a/2034649/iii_encuentro_de_h%C3%A9roes_con_piel_de_cristal_en_bog
ot%C3%A1
Universo de enfermedades
http://universodeenfermedades.blogspot.com/2012/10/iii-encuentro-nacional-de-heroescon.html
De verano
http://www.deverano.net/384354/noticias/ong-implementara-encuentro-para-pacientes-conpiel-de-cristal/
Blog Bagatela
https://blogbagatela.wordpress.com/about/page/4/
La Patria.com
http://www.lapatria.com/breves/pildoras-saludables/pildoras-saludables-17738
Facebook – Colmundo Radio
http://www.facebook.com/colmundo?filter=2
Facebook – Telecafé
http://eses.facebook.com/expresiondelonuestro?fb_sig_profile=136756506306&fb_sig_is_admin
=0&fb_sig_type=TELEVISION&fb_sig_is_fan=0&fb_sig_locale=es_LA&fb_sig_in_new_facebook=1&
fb_sig_time=1283057529.1824&fb_sig_logged_out_facebook=1&fb_sig_added=0&fb_sig_country
=us&fb_sig_page_id=136756506306&fb_sig_page_added=1&fb_sig_api_key=19210774b9d4b41e
e37fec6a9c8daec4&fb_sig_app_id=2352557895&fb_sig=c5a57e3b624ec5540749b62645d53e67&
filter=2
Facebook- Image and Press
http://www.facebook.com/imageandpress?ref=tn_tnmn
Twitter - Enfermedades raras.es
https://twitter.com/eerr_es/status/257785469255970816