In the week of June 29-July 3, 2020, we organized the first online group of patients with Myasthenia Gravis. It was a test both for us and for the www.centrulnoro.ro platform that is still in development. 16 patients participated, of which 10 patients who were no longer in the services of the NoRo Center, one of the patients being newly diagnosed (for about 3 weeks). The program was carried out over a period of 5 days, with a daily schedule between 10.00-12.00 and 15.00 -16.00. This week's activities included discussions and training in the medical field (neurology and genetics), social, nutrition, physical therapy and psychological counseling. Patients asked questions about the general aspects of the disease, the rights and obligations of people with disabilities or nutrition for autoimmune diseases. They had the opportunity to meet other patients who face the same problems and were able to share their experience in the fight against the disease.
In conclusion, the patients expressed their desire to have such sessions much more often (3 times / week) and eventually, the sessions should be organized after 16.00 because some of the patients have jobs.
Feedback from the Miastenia Gravis National Association this week: The online group of patients with #MiasteniaGravis developed in collaboration with the NoRo Center (official page) in Zalau has ended.
“They were 5 unique days! 10 people with #MG took part every day in group therapy with psychologist Mihaiela Fazacas. I talked to Mocutiu Ramona (social worker) about the rights and obligations of people with disabilities. Dr. Diana-Laura Miclea, a geneticist, and Dr. Ritesh Seewooram, a neurologist, listened to us and gave us appropriate advice. Dr. nutritionist-dietitian Meda Ada Bugi explained to us what / how good it is to eat to feel good. And of course, exercise should never miss from the daily schedule, so Demjen Zelinke, kinetotherapist, showed us light exercises, suitable for our strength, but which will help us stay in shape if we practice them every day. We have become friends and we are sure that we will support each other when needed. Thank you Dorica Dan for giving us the opportunity to end the #MiasteniaGravisMonth nicely and to be pioneers for future groups of patients with #rarediseases. The technical part was provided by Dombi Stefi (IT specialist) ”.
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