Day 6 – News-style Post
Dystonia is a neurological disorder that now affects a considerable amount of people around the world. Regarding the writer’s cramp, a type of focal dystonia, the prevalences are inaccurate. According to the “Journal of Londrina” – Paraná(one of the states of southern Brazil), dystonia affects about 0.7% of Brazilians, impairs quality of life and damage to self-esteem of the patient. The report of the Journal in 2008 states that in Brazil, according to data from the Ministry of Health, more than half a million people are carriers of dystonia. But that number may be higher, since the disease is difficult to diagnose.
The Dystonia is a neurological disease more common than other well-known, such as motor neuron disease, myasthenia gravis, or Huntington’s disease. “The incidence is estimated at 2 cases per million population per year for generalized dystonia and 24 cases per million population per year for focal dystonias, resulting in a prevalence of 3.4 per 100,000 for generalized dystonia and 29.5 per 100,000 for focal dystonia, “said experts from the Ministry of Health of Brazil. Generally dystonias are not properly diagnosed, reasons why, then, the true incidence and prevalence of this disease are probably much higher than 1.4.
Another aspect is that in Brazil, patients with dystonia has no official association or an organization that provides a support. Worldwide, we found associations seeking to give care to people with dystonia, as AMADYS in France, the Dystonia Society in England and the ADS in USA, and others non profit corporations. In Brazil, we had ABPD (Associação Brasileira de Portadores de Distonia) whose performance in the country was more shy and acted in a small region of the country.
Anyone who has a disabling neurological disease like this that does not have a definite diagnosis and no treatment, need to have support and therapeutic support groups to better understand the disease, learn to live with it and seek their rights. The only way to share the pain and the experience of living with dystonia in Brazil is through isolated actions of a few groups in social communities as “Câimbra do Escritor” group on Facebook and Orkut or some isolated efforts. I think social media is important in this aspect, however, is not very appropriate because you are exposed too.
Moreover, one of the positive aspects regarding dystonia is that the Public Health System of Brazil provides free botox for people with neurologic movement disorder. According to the Department of Health Care of the Ministry of Health dispensing of Botulinum toxin for patients with neurological movement is made by SUS (Sistema Único de Saúde) since 2003, after the approval of the Therapeutic and Clinical Guideline -dystonias.