May 15 is Tuberous Sclerosis Complex Global Awareness Day. It is an orphan disease. There are a total of one million people with such diagnosis in the world. Early or even prenatal diagnosis may significantly improve the quality of life of a TSC patient. However, this is absolutely not affordable for such families, so state support is vital, said Iryna Hladun, head of the NGO \u201cUkrainian Association for support of patients with tuberous sclerosis\u201d at a press briefing at Ukraine Crisis Media Center. \u201cTSC requires constant medication, and parents cannot sustain it. State support for patients\u2019 treatment, rehabilitation and socialization is needed. If we start it in time together with the state, we\u2019ll give patients a chance to become fully functional citizens. Absence of medical support means fast disability and death,\u201d she explained.<\/p>\n
These are oncology and antiepilepsy drugs. \u201cThe antiepilepsy drug Vigabatrin is effective in 70 % or more cases. When seizures go away, children progress in their development. The sooner it is used, the smaller future mental impairment will be. When treatment continues for years, it\u2019s difficult to do without state support,\u201d said Olena Savchenko, head of Pediatric Neurology Department at National Special Pediatric Clinic \u201cOKHMATDYT\u201d. Nevertheless, this drug is not registered in Ukraine. Oncology drug Everolimus has side effects, but its efficacy outweighs these side effects. For instance, no one can make drug concentration in Kyiv today due to lack of funding. \u201cMaking drug concentration in Kyiv today is impossible. Shalimov\u00a0National\u00a0Institute\u00a0of Surgery and Transplantology in Kyiv could do it with the medicine producers\u2019 financial support. Today it is impossible, though necessary,\u201d said Stella Kushnirenko, PhD in Medicine, lecturer of the Department of Nephrology at Shupyk National Medical Academy of Postgraduate Education.<\/p>\n
The Law On life treatment of patients with rare diseases <\/em>is in effect in Ukraine, which entitles such patients and their families to demand satisfaction of their requirements. \u201cOrphan diseases should be a priority for the state, and orphan patients\u2019 need should be taken into account in every reform,\u201d believes Tetiana Kulesha, head of the Council of Public Union \u201cOrphan diseases in Ukraine\u201d. There are other draft bills that should enhance legal framework. \u201cThere are three draft bills at present which should reconsider philosophy of attitude towards people with such needs,\u201d added the Member of Ukrainian Parliament Oksana Yurynets.<\/p>\n In addition to financial support of medical treatment, TSC patient need socialization and community involvement. \u201cPeople with special needs should be integrated into society. You cannot hide them. You should keep them company. Society needs to see them. You\u2019ll see that these people can join the others in singing or doing crafts,\u201d said Eberhardine Seelig, President of David Deacon Charity Institution –\u00a0 Childhood Cancer Foundation Ukraine.<\/p>\n","protected":false},"excerpt":{"rendered":"