When I was nine years old, my younger brother Carlos began to feel weaker than the other kids, my mother visited different doctors, I remember they wore their “white lab coats” that bring to patients a feeling of confidence. Nevertheless, at least in Mexico, doctors are not always prepared enough to diagnose this disease, perform genetic testing or to bring genetic counseling. Preparation to treat diseases considered “rare” is still scarce in Mexico; since “rare diseases “are not as relevant as other public health problems.
My mother went to PPMD meetings in which researchers presented new insights to Duchenne Muscular Dystrophy, while my father took care of us in Mexico (the voice inside of me said: when I grow up, I want to wear a lab coat and know what to do). The disease-causing mutation of my brother was finally found in 2009 in the Leiden University Medical Center when he was 25 years old. We are grateful to the ones that “wear a white lab coat” and really know what they do, they care about improving techniques, tests and health systems, the ones that teach young minds that become researchers, clinicians and field specialists in biomedical sciences.
Now, I have a great group of colleagues who are neurologists, rehabilitation physicians, geneticists, pediatricians; science professors and students of biomedical sciences that in collaboration with parent´s associations from different states in Mexico, we all are trying our best to improve the way that Duchenne Muscular Dystrophy is diagnosed and treated in our country.
So, if you wear a “white lab coat” probably means that you can bring confidence to the ones that suffer this disease; you probably can change the system and improve healthcare in your own country or community. Even if Mexico is a limited-resource country, we encourage you to give your best effort to work and support all those families that suffer this genetic disease.
All our efforts in “genomic medicine”, molecular diagnosis, rehabilitation programs and orphan disease programs, should on first place serve to improve healthcare to underserved groups, to help all those children and families affected by Duchenne Muscular Dystrophy. Please get involved, join our research projects, support parent associations where you live, and find your own way to help. Mexico is rich in inner force and spirit of service.
Please, if you wear a “white lab coat” be kind, be prepared and see in your patient a person that needs you to know best.