Don’t postpone treatment for later

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You have a retinal disease that requires surgery, but you’re afraid of being in the hospital because of the Coronavirus outbreak? Do not postpone treatment for later, because the progression of the disease can lead to irreversible deterioration of your vision. In the ophthalmology clinic, vitreoretinal treatments are performed, which allow the treatment of diseases of the retina and vitreous body.

The clinic is one of the most well-known ophthalmic clinics in Poland, with the highest degree of reference.

During the procedure, the surgeon can:

– apply retinal fluid that has become detached,
– remove blood or distemper obscuring vision,
– close the hole in the retina,
– remove the nasolabial membrane,
– remove traction pulling the retina and threatening its detachment,
– removal of proliferative membranes with laser retinal protection in advanced diabetic retinopathy.

Will the adoption of a national plan

What rules should be adopted to fund the diagnosis and treatment of rare diseases in order to ensure that patients improve their situation? Will the adoption of a national plan for rare diseases regulate care for this group?

We have thought-out criteria, a defined standard, what the reference centre should look like, what functions it should perform, what areas to take responsibility for, what infrastructure and personnel to dispose of. This is one of the tasks that we set out for ourselves in the strategy: to designate reference centres, to give them a different status, to change the way these centres are financed.

The centres of expertise shall provide a multidisciplinary team of medical and paramedical personnel, experience in the diagnosis and care of patients with a particular disease or group of diseases, appropriate technological facilities and documented international cooperation.

Will the adoption of a national plan

Today, despite advances in technology and medicine, there is still a lack of places where patients with rare diseases receive comprehensive care. In order to achieve the best results of treatment, an interdisciplinary approach to the patient and the treatment process is necessary. Effectiveness comes from knowledge and sharing of experience, including research results, to develop and validate the therapies used.

Medical anthropology, applied science

In the west, medical anthropology, applied science, is recognized by medical communities, and researchers from both communities work together. In Poland, it primarily acts as an academic discipline and from this perspective influences biomedicine or cooperates with it. Initiatives by the health system to involve medical anthropologists in research and problem-solving are rare. But that’s changing.

Researchers conduct interdisciplinary comparative qualitative studies of NT. rare and chronic diseases. They collect descriptions of experiences with rare diseases in the context of treatment, as well as social care and health policy. They are interested in the bottom-up acquisition of knowledge about rare diseases, and for this purpose the self-organization of parents of pediatric patients.

They will learn about the experiences of parents of children with rare metabolic diseases, including LCHADD: a rare, incurable and chronic disease, and learning about the principles of childcare. The subject of their research is not disease in the medical sense, but personal illness experience in terms of physical experiences, mental feelings and social perception of a patient with a rare genetic disease.

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