The Butterfly Children from Mexico
Lead Dermatologist: Julio Cesar Salas Alanis, MD, PhD
Project team members:
Affiliation: DEBRA Mexico
DEBRA provides knowledge on prevention, genetic counselling and education to Epidermolysis Bullosa EB patients and their families via lectures, conferences at schools, radio, TV and social media.
In Mexico, the disease epidermolysis bullosa (EB) is unknown to some physicians and the patients have to deal with one of the worst health systems in the world. Most of the patients do not have health insurance to cover the cost of the treatment and they are often too poor to pay for all the supplies from their own resources or income. DEBRA provides knowledge on prevention, genetic counselling and education to EB patients and their families. The organization also give lectures, conferences at schools and educate/provide information on radio, TV and social media.
In Mexico, unlike in other countries, the national health system and/or the health insurance companies do not give the support needed by Epidermolysis Bullosa (EB) patients. Even the Mexican Institute of Social Security (IMSS- the system of Mexican health with most associates) send their EB patients to DebRA Mexico. Here, we offer free consultation but ask these institutions to support us with material for wound healing, dressings, drugs and other patient needs. However, such requests are normally denied. Similar to other non-profit and voluntary institutions, the economic needs to maintain our services are very high. We depend on donations and the organization of fund-raising events such as bazars, lotteries, little raffles, and we ask support from private institutions and sometimes from government Institutions. We have provided support for 20 years without government support. The economic challenge is the big problem of non-profit associations like us.
The project’s target population are the Epidermolysis Bullosa patients, although there has been a recent extension of the target group to patients suffering from any kind of genodermatosis. In Mexico, the disease is not known by all physicians and the patient has to deal with one of the worst healthcare systems in the world. Most of the patients do not have a health insurance that covers the cost of the treatment, and they are often too poor to pay all the supplies from their own income. DEBRA provides help in terms of prevention, genetic counseling, and education to the patients and their families. We also give lectures, conferences at schools, and provide education and information on radio, TV and social media.
To help improve quality of life, DebRA Mexico has been giving free psychological therapies since 1994. We have also been working with many psychologists and have been working in collaboration with different DebRAs around the world by doing research on different topics. We have been published by the Journal of the American Academy of Dermatology (J Am Acad Dermatol. 2013;69(4):652-3). Our paper is entitled “Measuring quality of life in epidermolysis bullosa in Mexico: cross-cultural validation of the Hispanic version of the Quality of Life in Epidermolysis Bullosa questionnaire”.
DebRA is a unique organization that shares and helps other international DeBras and researchers to collaborate on research projects. Our sense of responsibility is demonstrated by our continuous support to EB patients and their families for 20 years. Furthermore, we conduct local research and participate in international research collaborations. We have made arrangements together with public and private health facilities to improve care for our patients. Since 2006, we have conducted more than 80 reconstructive surgeries, over 50 esophageal dilations and have provided over 13,000 services to our patients.
Our project is innovative, teaching patients and their families about managing the disease and proper care. We are the only Mexican non-profit association that helps these patients and we have been cooperating in various international protocols to improve their health and treatment. We have a biobank containing DNA of more than 250 families and around 50 immortalized cell lines from our patients, which is available to support international and national research projects. Our association combines patient and family care with research aimed to improve future diagnosis and treatment. We have been supplying needs of families affected by Epidermolysis Bullosa through care creams, food, dressings, reconstructive hand surgeries, esophageal dilations, and many other programs.
Success criteria and evaluation
The expected outcomes and benefits for the community are:
Our goal is to have educated patients who are responsible for their wound healing through adherence to therapeutic guidelines. Furthermore, caregivers, patients and their families are encouraged to participate in lectures about the disease in their schools and workplaces.
ACCESS TO CARE:
Patients should follow the caregiver´s instructions regarding the proper use of their medications as well as prescriptions for specialized treatments such as dental care, esophageal dilation and hand surgeries.
ACCEPTANCE OF THEIR CONDITION:
Family and group therapies guided by a psychologist aim to help patients and their families to accept their condition and face life with the disease. Patients benefit from a combination of treatment adherence, acceptance, and the reduction of the stigma by improving quality of life through improved self-esteem.
Despite this devastating disease, patients have been able to have careers, obtain degrees, and/or become successful in establishing small businesses. For example, “Bely Bunnies” is a company that raises rabbits. The 30 year-old owner has done a great job with the local sale of rabbits. She even supports her parents despite suffering from dystrophic EB. Another patient, Armando, who suffers from recessive DEB is also an entrepreneur.