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Description
According to the World Health Organization there are around 10,000 individuals currently living in Poland with genetic mutations of the retina that lead to complete eyesight loss. This is a rough estimate because Poland does not run an official register of its own. We have been running a text messaging system and so far over 500 individuals with those types of retina issues have registered. Due to the slow progression of the disease and lack of statistics and diagnosis, patients are left to their own devices. Our observations suggest that such lack of support negatively affects their mental health and overall well being. Recently, a new method of saving the eyesight of some of the patients has emerged. The first ever gene therapy has been designed and the treatment allows to reverse the consequences of the mutation. Unfortunately, it is still unavailable in Poland. Individuals with the illness are at risk of social exclusion resulting from a limited access to diagnostics and therapy that could prevent the further development of the disease. We would like to address these problems by organizing nationwide workshops and trainings, during which the participants will develop their knowledge and skills pertaining to asserting their rights. We will collaborate on a report about individuals with rare, genetic retina conditions and recommendations for meeting their needs and postulates. These tools will serve as a basis for the participants to lobby and advocate for themselves and other patients. Additionally, we will create a guidebook for those with the condition that will help educate about the retina genetic mutations, and the patient’s path from a suspicion of the disease, a diagnosis, and ending with healing. The guidebook will include tips on how to – despite the illness – keep active in different spheres of one’s life. We will also produce three animated movies for the patients and their families about the rare retina genetic mutations.
Summary of project results
According to the World Health Organization there are around 10,000 individuals suffering from retina genetic disorders leading to blindness, currently living in Poland. The data is only an estimate, as there are no official databases within Poland. For the past two years we have been running a text message (SMS) service and we have had over 500 individuals with these conditions register so far. Due to a slow pace of the disease''s development and lack of reliable statistics and diagnoses, patients have been forced to rely on themselves and each other. Our observations have proven that a lack of sufficient support had negatively impacted patients'' mental health and their working conditions. A short while before our project''s commencement, a new opportunity to save some of the patients'' ability to see presented itself. The first gene therapy allowing to reverse the effects of the disease has been developed. Yet, it was still inaccessible in Poland. People faced a risk of being socially excluded due to a lack or limited access to diagnostic methods and therapy halting disease''s progress. We have responded to those problems by organizing nationwide workshops and trainings, during which participants learned about their rights and the ways to protect them. Together, we have developed a report on the circumstances surrounding individuals with rare retinal disfunctions, as well as recommendations pertaining to the needs and lobbying efforts of the group. These actions were a foundation for further activism by the group. We have also organized two separate conferences with healthcare experts presenting. Additionally, we developed a guidebook for patients with genetic retinal disfunctions, explaining in a simple way everything from an early diagnosis to diagnostics and treatment. It contains several tips on how to remain active despite the illness. We have also developed four animated educational films for patients and their families.Our project evaluation concluded that the initial efforts to integrate members of the community, especially younger patients, and their parents, was met with enthusiasm. It decreased a sense of isolation. We are confident the efforts to support the community will continue after the conclusion of the project.
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