Rare diseases: the importance of the caregiver

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The reality of those who need to collect blood, take prescription drugs, attend appointments, participate in physical therapy, use specialized equipment and access various social support services is very tiring, both for those who are cared for and for those who care. 

It is a routine that, added to everyday life, proves to be extremely challenging, especially for those affected by rare diseases, who are usually deprived of other activities such as leisure, school and socialization activities in general.

A rare disease is considered to be one that affects up to 65 people in every 100,000 individuals, according to the World Health Organization (WHO).

Improving the quality of life for people who are affected by rare diseases is not just in the government's hands, but in each of us. We can all make life easier for families who have a family member with genetic diseases or any other temporary or permanent difficulty.

Often, our collaboration can be as simple as looking with empathy, prioritizing or helping to raise awareness.

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Today, there are more than 6,000 rare diseases that affect more than 300 million people worldwide. Each such disease has an impact on the life not only of the patient with the comorbidity, but also on the lives of other people, since such diseases require daily care that is often performed by a caregiver.

Research indicates that 8 out of 10 patients have difficulties performing basic tasks and are cared for by their family members, who organize themselves and sometimes even take turns to provide the necessary care.

From the diagnosis stage to the search for the best treatment, everything is done by those who are willing to take care of it. The caregiver ends up having to deprive himself of some activities, such as working or studying abroad, as the individual who has a rare disease usually has limited mobility due to several physiological and social factors and time becomes scarce in the midst of so many consultations and procedures.

It is a difficult and complex process, especially when there is a lack of information and government support. Communication and information about these diseases need to be more efficient to meet the interests of both patients and those they care for.

In Brazil alone there are approximately 13 million people with some type of rare disease. This number shows the need for more knowledge of what rare diseases are and how we can identify them and, subsequently, treat them.

The foot test in the maternity ward is very important, because it can detect any disease in the first days of life, allowing the treatment to be done with more efficiency and urgency.

The demand for caregivers capable of accompanying these people who need more specific care has also increased in our country. The caregiver is a person who cares for the well-being of another person who is unable, due to physical or intellectual limitations, to take care of himself, and who needs care with personal hygiene, food and medication control.

That's why it's so important to also take care of those who care. It is important to provide information, support and verify the needs of those who are caring, whether professional or someone close to the family, so that the person feels welcomed, in addition to being necessary.

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