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В этом выпуске подкаста «Голос Е.В.А.» мы познакомимся с Марией — мамой 17-летнего юноши, который с рождения живёт с ВИЧ-инфекцией. С самого детства он был увлечён спортом и до недавнего времени мечтал о карьере профессионального спортсмена.\n

Однако год назад его мечта рухнула, когда он узнал, что ему запретили участвовать в соревнованиях и играть в команде из-за положительного ВИЧ-статуса. О том, как это повлияло на его жизнь и почему закон ограничивает возможности ВИЧ-положительных людей заниматься профессиональным спортом, мы сегодня поговорим с Марией — мамой юного спортсмена.\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n

Клинические рекомендации по допуску лиц к занятиям спортом (тренировкам и спортивным\n

соревнованиям) в соответствии с видом спорта, спортивной дисциплиной, возрастом, полом при инфекционных заболеваниях: fizdispanser.com

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В этом выпуске подкаста «Голос Е.В.А.» мы будем говорить о теме, которая вызывает много вопросов и переживаний, — о зависимостях.

С Николаем Екимовым, программным директором благотворительного фонда «Диакония», председателем межрегиональной благотворительной общественной организации «Содействие», психологом, обсуждаем, как зависимость родителей от алкоголя или наркотиков может сказаться на детях, особенно если у ребёнка положительный ВИЧ-статус и его жизнь и здоровье зависят от состояния и восприятия мира родителями. А также выясняем, какие пути выхода из тупика зависимости от веществ могут найти родители ребёнка с ВИЧ. \n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n
Благотворительный фонд «Диакония»: https://diaconiafond.ru/ \n

МБОО «Содействие»: https://spb-sodeistvie.ru/

","podcast_duration":2250},{"id":71577959,"uuid":"f7bb8532-ddac-11ef-8d2f-ac1f6b4dd332","cover_url":"/pub/c/cover/71577959.jpg","url":"/podcast/associaciya-e-v-a/mne-govorili-chto-ya-rodila-smertnika-71577959/","title":"«Мне говорили, что я родила смертника»","cover_ratio":1,"is_draft":false,"art_type":23,"prices":{"final_price":null,"inapp_price":null,"inapp_base_price":null,"full_price":null,"discount_price":null,"litcoin_count":0,"inapp_name":null,"inapp_base_name":null,"currency":null,"discount_percent":null,"cost_with_bonus":0,"bonus_money":0,"account_money":0,"can_be_paid_by_account_money":true},"is_auto_speech_gift":false,"subtitle":"","min_age":0,"is_adult_content":false,"cover_height":1400,"cover_width":1400,"foreign_publisher_id":null,"language_code":"ru","symbols_count":1640,"expected_symbols_count":null,"podcast_serial_number":22,"last_updated_at":"2025-01-28T22:20:43","last_released_at":"2025-01-28T22:28:59","read_percent":0,"is_finished":false,"is_free":true,"is_promo":false,"is_advertising":false,"advertising_marking":null,"event_data":null,"my_art_status":0,"is_subscription_art":false,"is_available_with_subscription":true,"is_available_with_litres_subscription":false,"availability_with_partner_subscriptions":[],"art_subscription_status_for_user":"no_subscription","is_abonement_art":false,"is_available_with_abonement":false,"is_subscription_token_art":false,"is_available_with_subscription_token":false,"can_be_preordered":false,"is_preorder_notified_for_user":false,"is_exclusive_abonement":false,"is_drm":false,"in_gifts":0,"is_fourth_art_gift":false,"podcast_left_to_buy":null,"availability":1,"available_from":"2024-10-01T09:56:56","library_information":null,"persons":[{"id":33310720,"uuid":"ce3f5174-dd8b-11ef-8ce3-0cc47af30fe4","full_name":"Ассоциация «Е.В.А.»","full_rodit":"","url":"/author/associaciya-e-v-a/","role":"author"},{"id":33310717,"uuid":"b7b45289-dd8b-11ef-8ce3-0cc47af30fe4","full_name":"Ассоциация «Е.В.А.»","full_rodit":"","url":null,"role":"publisher"}],"is_liked":false,"rating":{"user_rating":null,"rated_1_count":0,"rated_2_count":0,"rated_3_count":0,"rated_4_count":0,"rated_5_count":0,"rated_avg":0,"rated_total_count":0},"linked_arts":[],"series":[],"date_written_at":"2024-10-01","release_file_id":115312483,"preview_file_id":null,"labels":{"is_bestseller":false,"is_litres_exclusive":false,"is_new":true,"is_sales_hit":false,"is_audio_series":false},"in_folders":null,"is_archived":false,"interacted_at":null,"read_at":null,"purchased_at":null,"is_hidden":false,"synchronized_arts":[],"synchronizations":[],"alternative_version":null,"in_user_cart_status":"not_in_cart","is_draft_full_free":false,"webtoon_chapters_count":null,"webtoon_last_read_chapter_id":null,"webtoon_last_read_chapter_number":null,"html_annotation":"

«Мне говорили, что я родила смертника», — вспоминает Ольга, рассказывая о периоде, когда в её жизни появился ВИЧ.\n

Ольга уже 20 лет живёт с ВИЧ-инфекцией. Она узнала о своём статусе через месяц после рождения ребёнка, а когда её сыну было три года, ему тоже поставили этот диагноз. Это было начало 2000-х, в то время, когда люди ещё не понимали разницы между ВИЧ и СПИДом, терапию назначали не всем, а говорить о ВИЧ было страшно и, по сути, не с кем.\n

Но с тех пор прошло много лет, многое изменилось. В этом выпуске «Голос Е.В.А.» мы поговорили с Ольгой о том, как повлияло на жизнь её сына позднее начало приема АРВТ и о том, как воспитать уверенного в себе, целеустремлённого и успешного сына не смотря ни на что.\n

Хочется добавить, что в нашем подкасте было уже много личных историй, но о страхе и чувстве вины мы так открыто говорим с героиней впервые. Послушайте, возможно, тем, кто сейчас находится в такой же ситуации именно история Ольги поможет не утонуть в чувстве вины и стремиться к лучшему для своего ребенка.\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n

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Почему в наше время всё ещё существует ВИЧ-диссидентство? По каким причинам некоторые родители не хотят давать своим детям антиретровирусную терапию (АРВТ) и сами отказываются от лечения? Как чувствуют себя дети, когда узнают о своём диагнозе, если родители не рассказывают им об этом? И винят ли они своих родителей за то, что у них положительный ВИЧ-статус? \n

Об этом и многом другом в новом эпизоде подкаста «Голос Е.В.А» мы поговорили с медицинским директором благотворительного фонда «Нестрашно», врачом-инфекционистом университетской клиники «H-Clinic», кандидатом медицинских наук — Екатериной Степановой. \n

Небольшой спойлер: в выпуске мы затронули тему стигмы среди медицинских работников и педагогов, а также узнали о лагере с инклюзивной сменой для детей, живущих с ВИЧ. Не пропустите!\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n

Благотворительный фонд «Нестрашно»: nestrashno.com

Университетская клиника «H-Clinic»: h-clinic.ru

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Сколько детей вы представляете, когда слышите словосочетание «многодетная мать»? Троих, четверых или, может быть, пятерых? А вот у героини этого выпуска подкаста «Голос Е.В.А.» их семь!\n

Ольга — так зовут эту удивительную женщину, которая поделилась с нами своей историей. Уже более десяти лет она живёт с положительным ВИЧ-статусом и воспитывает семерых детей, один из которых тоже живёт с ВИЧ. В интервью Ольга впервые откровенно рассказала о том, как она переживала свой диагноз, как сообщила детям о ВИЧ и как нашла в себе силы продолжать жить дальше, заботясь о своих детях и их будущем. \n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n
Благотворительный фонд «СТЭП»: www.bfstep.ru

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«Когда мне сообщили о моём диагнозе, я сразу сказала: «Лечите!». Но в ответ услышала, что это неизлечимо», — вспоминает Екатерина о том, как она узнала о своём диагнозе. Это случилось двадцать лет назад, когда она впервые стала мамой. В то время Екатерина ничего не знала о ВИЧ и даже не подозревала, что это коснётся её семьи.\n

О том, как её дочери диагностировали ВИЧ, как в этот непростой период ей помогли группы взаимопомощи и как они с дочерью живут сейчас, Екатерина рассказала нам в новом выпуске подкаста «Голос Е.В.А.». \n

Напомним, что по тегу #голос_ЕВА, на платформе Mave или в Яндекс Музыке можно найти другие личные истории, а также полезные выпуски с медицинскими специалистами и сотрудниками НКО, которые оказывают помощь людям с ВИЧ.\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n

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Этот эпизод подкаста «Голос Е.В.А» посвящён теме, которая может оказаться очень сложной и запутанной для многих родителей и опекунов — диагноз ВИЧ у ребёнка. \n

Вместе с Екатериной Меркуловой, основателем и директором автономной некоммерческой организации «Пора помогать», мы разбирались, как принять эту информацию, почему важно вовремя поговорить об этом с ребёнком и найти помощь для себя. Также Екатерина рассказала, кто такие наставники и как они могут помочь семьям, в которых воспитываются дети с ВИЧ.\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n

АНО помощи детям и молодежи с социально значимыми и хроническими заболеваниями «Пора помогать»: www.porapomogat.ru

","podcast_duration":2034},{"id":71577944,"uuid":"e5194943-ddac-11ef-8d2f-ac1f6b4dd332","cover_url":"/pub/c/cover/71577944.jpg","url":"/podcast/associaciya-e-v-a/ty-znaesh-mama-ty-luchshaya-71577944/","title":"«Ты знаешь, мама, ты лучшая!»","cover_ratio":1,"is_draft":false,"art_type":23,"prices":{"final_price":null,"inapp_price":null,"inapp_base_price":null,"full_price":null,"discount_price":null,"litcoin_count":0,"inapp_name":null,"inapp_base_name":null,"currency":null,"discount_percent":null,"cost_with_bonus":0,"bonus_money":0,"account_money":0,"can_be_paid_by_account_money":true},"is_auto_speech_gift":false,"subtitle":"","min_age":0,"is_adult_content":false,"cover_height":1400,"cover_width":1400,"foreign_publisher_id":null,"language_code":"ru","symbols_count":1084,"expected_symbols_count":null,"podcast_serial_number":17,"last_updated_at":"2025-01-28T22:20:11","last_released_at":"2025-01-28T22:26:54","read_percent":0,"is_finished":false,"is_free":true,"is_promo":false,"is_advertising":false,"advertising_marking":null,"event_data":null,"my_art_status":0,"is_subscription_art":false,"is_available_with_subscription":true,"is_available_with_litres_subscription":false,"availability_with_partner_subscriptions":[],"art_subscription_status_for_user":"no_subscription","is_abonement_art":false,"is_available_with_abonement":false,"is_subscription_token_art":false,"is_available_with_subscription_token":false,"can_be_preordered":false,"is_preorder_notified_for_user":false,"is_exclusive_abonement":false,"is_drm":false,"in_gifts":0,"is_fourth_art_gift":false,"podcast_left_to_buy":null,"availability":1,"available_from":"2024-09-04T13:57:47","library_information":null,"persons":[{"id":33310720,"uuid":"ce3f5174-dd8b-11ef-8ce3-0cc47af30fe4","full_name":"Ассоциация «Е.В.А.»","full_rodit":"","url":"/author/associaciya-e-v-a/","role":"author"},{"id":33310717,"uuid":"b7b45289-dd8b-11ef-8ce3-0cc47af30fe4","full_name":"Ассоциация «Е.В.А.»","full_rodit":"","url":null,"role":"publisher"}],"is_liked":false,"rating":{"user_rating":null,"rated_1_count":0,"rated_2_count":0,"rated_3_count":0,"rated_4_count":0,"rated_5_count":0,"rated_avg":0,"rated_total_count":0},"linked_arts":[],"series":[],"date_written_at":"2024-09-04","release_file_id":115312405,"preview_file_id":null,"labels":{"is_bestseller":false,"is_litres_exclusive":false,"is_new":true,"is_sales_hit":false,"is_audio_series":false},"in_folders":null,"is_archived":false,"interacted_at":null,"read_at":null,"purchased_at":null,"is_hidden":false,"synchronized_arts":[],"synchronizations":[],"alternative_version":null,"in_user_cart_status":"not_in_cart","is_draft_full_free":false,"webtoon_chapters_count":null,"webtoon_last_read_chapter_id":null,"webtoon_last_read_chapter_number":null,"html_annotation":"

Героиней нового эпизода подкаста «Голос Е.В.А.» стала Дарья. Повзрослеть ей пришлось рано: в 13 лет она потеряла маму, а отец, у которого уже была другая семья, не уделял ей должного внимания. Когда девушка узнала о своём статусе, отец от неё отказался. О том, что у неё ВИЧ, Дарья узнала, как и многие наши клиентки, во время беременности. В этот эмоционально сложный период рядом с ней был только муж, который, как выяснилось позже, скрыл свой ВИЧ-статус. \n

Дарья пережила непростые времена: она потеряла мужа, а затем узнала, что у её дочери тоже ВИЧ. Чтобы справиться с болью и тревогой, Дарья обратилась к алкоголю, забыв о том, что ей самой нужно принимать лекарства и давать их своему ребёнку. Это привело к тому, что органы опеки стали контролировать ситуацию, а Дарья оказалась под угрозой потери ребёнка. О том, как ей удалось преодолеть все испытания, которые ей преподнесла судьба, и как сейчас они живут с дочерью, Дарья рассказала нам в этом выпуске. Рекомендуем послушать прямо сейчас.\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n

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Гостем этого выпуска подкаста «Голос Е.В.А.» стала удивительная женщина, которая поделилась своей историей.\n

Зиля уже много лет живёт с вирусом иммунодефицита человека. За это время она столкнулась со множеством трудностей и испытаний, таких как ВИЧ-ассоциированные заболевания, потеря мужа и диагноз сына. В откровенной беседе Зиля поделилась с нами своей историей. Она рассказала, как узнала о своём положительном ВИЧ-статусе и как это изменило её жизнь.\n

Её история восхищает нас своей силой и отвагой. Вместо того чтобы сдаться и отчаяться, она решила принять обстоятельства и бороться. Она стала активисткой, защищающей права людей, живущих с ВИЧ, помогая им преодолевать стигму и предрассудки.\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина\n

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru

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Что такое ВИЧ? Вирус иммунодефицита человека (ВИЧ) ослабляет иммунную систему организма, делая его более восприимчивым к инфекциям и другим заболеваниям. Однако влияние вируса простирается далеко за пределы физического здоровья — вирус также может затрагивать нервную систему.\n

Для обсуждения этой сложной и важной темы мы пригласили настоящего эксперта — Минина Алексея Владимировича, детского невролога, врача высшей категории и кандидата медицинских наук с более чем 20-летним стажем. Алексей Владимирович поделится своими знаниями, опытом и осветит важные аспекты, касающиеся диагностики, лечения и поддержки детей и подростков, живущих с ВИЧ, и расскажет:\n

— Как ВИЧ воздействует на нервную систему и когнитивные функции детей?\n

— Какие симптомы и расстройства могут возникать у подростков с положительным статусом?\n

— Как выглядит наиболее часто встречающееся проявление длительного нелечения ВИЧ-инфекции?\n

— Как важна ранняя диагностика и поддержка для улучшения качества жизни детей и их семей?\n

«Голос Е.В.А.» — это подкаст, в котором эксперты в области ВИЧ делятся ценными рекомендациями и лучшими практиками. Мы уверены, что информация, представленная в этом эпизоде, будет полезна не только медицинским работникам, но и родителям, педагогам и всем, кто интересуется вопросами здоровья и хочет глубже понять этот вопрос.\n

Ведущая: Наталья Сухова\n

Обложка: Дарья Птичкина

Сайт Ассоциации «Е.В.А.»: evanetwork.ru\n

Телефон горячей линии: +7 (921) 913-03-04\n

Задать вопрос или предложить тему для выпуска: media@evanetwork.ru\n

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