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People with rare diseases are at risk for Covid-19, a disease caused by the new coronavirus. To guide them, the Rare Lives Institute prepared a brochure that provides general information about the disease and specific recommendations for family members, patients and their caregivers.
Regina Prospero, vice president of the institute, says that the idea for the brochure came up to try to clarify the many doubts the entity has received from people with rare diseases and their families about how to proceed with the coronavirus. “People want to know if they can leave the house, go to the hospital, what care they should have, if they need to wash their hands a lot or wash less, questions like that, that’s why we decided to make this brochure,” says the institute’s vice president, who It aims to promote the constitutional rights of patients with a rare disease in a situation of social vulnerability.
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People with a rare disease represent between 6% and 8% of the world population, of which around 80% are children, according to data from the World Health Organization (WHO). According to these figures, it is estimated that there are around 15 million people in Brazil with rare diseases, most of them children.
The brochure explains that people with a rare and chronic disease should follow the same care as the entire population, however, they should be more vigilant, since they have low immunity and Covid-19 can cause more serious complications in them.
Medical consultation and infusion
For patients who have a medical appointment or need to take infusion medications, a procedure that performs the direct application of fluids into the vein through a needle, the brochure advises against stopping treatment if it guarantees improvement and stability of the chronic illness. “The best you can do is call the doctor who is following the case and verify the patient’s safety at the treatment site,” the manual says.
Be careful when leaving home and when you return
For those who use a crutch, wheelchair, cane, or walker, the brochure recommends cleaning the high-contact parts of the hands and wheels after leaving home and returning. In the guide, there are also mental health guidelines and tips for those living with people at risk, including ventilated environments, regular bedding, and sleeping in separate rooms when a coronavirus infection is suspected.
Read also: England’s health agency warns of childhood syndrome that may be related to coronavirus
“The goal is that the brochure can help the quality of life of a person with a rare disease and was written in simple language that could be understood by anyone,” emphasizes the vice president of the institute Viva Raras.
Access the brochure here.
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