Overcoming: Alagoas doctor with ALS is invited to join the SUS program

Physician Hemerson Casado from Alagoas was invited by the Ministry of Health to join the “Educommunication in Rare Diseases” program. The cardiologist, diagnosed with Amyotrophic Lateral Sclerosis in 2012, announced this Thursday (2) that he will act as a consultant for the Unified Health System (SUS) training front-line professionals and helping in the early diagnosis of rare diseases throughout Brazil.

As a kickoff this week, the federal government launched the mascot “Rarinha”, symbol of the campaign. It will have the mission of disseminating information about the approximately 8,000 rare diseases known to date. Its creation was inspired by the test of the little foot, which allows the identification of serious and rare diseases in the first days of life. Recently, the exam was expanded and, until 2022, it will be able to diagnose more than 50 types of pathologies completely free of charge.

Telemedicine and UniverSUS – During the covid-19 pandemic, Casado says he saw telemedicine as an opportunity to go further. Due to the complications of ALS, the doctor lost his body movements and had to stop working. He decided to reframe his life and became an activist for rare diseases. Currently, only your eyes and brain are fully functioning. Therefore, Hemerson communicates through eye-reading software.

“The period of social isolation made me reflect on many things and one of them was how technology has helped medical professionals around the world. Then I thought: ‘why not?’ I posted an ad on my social networks and several opportunities began to appear”, he recalls. That’s when the Ministry of Health’s invitation came.

The man from Alagoas explains that he will act as a consultant training SUS professionals and contributing to the creation and dissemination of projects on rare diseases. The “UniverSUS Brasil” platform will provide free video classes in partnership with the Brazilian Society of Medical Genetics and Genomics (SBGM), the Federal Council of Medicine, the Brazilian Society of Family and Community Medicine and the Tele Saúde Nucleus of Rio Grande do Sul.

“To reach the diagnosis, many patients consult up to 10 doctors from different specialties. It’s a pilgrimage that lasts more than 2 years. One of the reasons is that we do not have qualified health professionals to diagnose and treat rare diseases that often have unknown symptoms”, highlights the doctor with ALS.

A disease is considered rare when it affects up to 65 people per 100,000 individuals. For 95% of pathologies there is no specific treatment. Only 3% of cases have surgical treatment or regular medication. Rare diseases can have a genetic origin or arise from environmental, infectious or immunological factors.

Telemedicine and UniverSUS – During the covid-19 pandemic, Casado says he saw telemedicine as an opportunity to go beyond

Other projects – Leading the Dr. Hemerson Casado Institute for almost 8 years – a non-profit organization based in Maceió, which works to disseminate information on rare diseases nationwide, in addition to the Ministry of Health, the cardiologist also celebrates other achievements. “I rediscovered the routine of a doctor at home and, for about three months, I have been working on preparing reports for tests, such as electrocardiograms. Everything is done remotely, in an innovative way. They arrive online, are analyzed and receive my opinion”, he says.

Currently, Dr. Hemerson Casado is also a Masters student in Health Sciences at the Federal University of Alagoas (Ufal). It was there that he raised funds for the foundation of the Pharmacological Innovation Laboratory (Laif), which conducts research with stem cells to fight neurological and rare diseases. “My expectations for the start of work at SUS are the best possible. I continue with an immense desire to live and achieve”, concludes the doctor.