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Waiting for results, deciding on genetic testing, managing uncertainty<\/p>\n
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Receiving a diagnosis, reimagining the future, pacing yourself<\/p>\n
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Rare challenges, \u2018expert by experience\u2019, living as well as possible<\/p>\n
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Acknowledging your feelings, how to manage them, finding hope<\/p>\n
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” content_phone=”<\/p>\n
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The challenge of uncertainty, managing anticipatory grief and anxiety<\/p>\n
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Types of change and loss, grieving the changes, recovering from trauma<\/p>\n
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Grief after bereavement, secondary loss, ways to cope, when to seek help<\/p>\n
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Acknowledging loss, growing around grief, reaching out to support<\/p>\n
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Conversations about dying, practical matters and making memories<\/p>\n
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Being a team, managing difficult feelings, dating with a rare condition<\/p>\n
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Ways to recharge, supporting siblings, coping with difficult behaviours<\/p>\n
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Opening up conversations, asking for support, \u2018who is good for what?\u2019<\/p>\n
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Deciding what to share and when, talking to children &\u00a0 young people<\/p>\n
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Ways to understand and cope with difficult feelings<\/p>\n
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Exercises for coping with anxiety and worry, journalling, self soothing<\/p>\n
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What stress is, and how to cope both short and longer term<\/p>\n
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Mindfulness for pain, relaxation exercises and befriending your body<\/p>\n
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Important foundations for mental wellbeing<\/p>\n
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Different types of pain, your relationship to pain, pain and trauma, and fear of pain.<\/p>\n
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Talking to professionals and other people about your experience, or fear of pain. Describing pain accurately to help access the best pain management approaches.<\/p>\n
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Medical and psychological approaches, complementary and alternative medicine, the role of spirituality or religion.<\/p>\n
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Being prepared for pain flares, crises or managing chronic pain.\u00a0<\/p>\n
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Coping with painful or unpleasant procedures, managing ongoing pain or pain episodes.<\/p>\n
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How to look after your own wellbeing when supporting someone in pain.<\/p>\n
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The causes and signs of tiredness, fatigue and exhaustion<\/p>\n
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Activity scheduling, pacing, spoon theory<\/p>\n
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Self-management strategies, making adjustments and understanding employer\u2019s responsibilites<\/p>\n
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Optimising the possibility of sleep, managing difficult thoughts feelings at night, coping with wakefulness, or interrupted sleep<\/p>\n
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Managing your own energy levels, changes to roles or responsibilities, and managing difficult feelings<\/p>\n
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Looking after yourself during appointments, tests, scans & procedures<\/p>\n
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Preparing yourself, supporting children, what if things go wrong?<\/p>\n
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Knowledge is power, multidisciplinary teams, who do you see for what?<\/p>\n
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New ways of communicating & relating, managing concerns, settling in<\/p>\n
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Connecting with others, how to find the right support for you<\/p>\n
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Types of therapy & counselling, how to access, support for young people<\/p>\n
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Financial, social care and education support, support for carers<\/p>\n
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How to access help urgently<\/p>\n
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Ways to have children, thinking about how your (or your partners) rare condition might affect your decisions<\/p>\n
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Tests and treatments before you get and to help you get pregnant, navigating work and relationships during assisted conception, coping if you decide to stop trying.<\/p>\n
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Pre-pregnancy planning, what to say to employers, navigating healthcare and medical terminations<\/p>\n
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Planning your birth, managing if things don\u2019t go to plan, genetic testing of newborns, bringing baby home or coping if you lose your baby<\/p>\n
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Circles of support, coping with the demands and stresses of trying to get pregnant, looking after your couple relationship<\/p>\n
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When you would like children but they are not possible, when you and your partner don\u2019t agree, when you are childless by choice<\/p>\n
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Wellbeing Hub Resources and information to help you live as well as possible with your rare condition. These pages are also available in other languages. Please use the menu in the bottom right hand corner.DiagnosisLooking for a diagnosis Waiting for results, deciding on genetic testing, managing uncertaintyEarly days Receiving a diagnosis, reimagining the future, pacing […]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_monsterinsights_skip_tracking":false,"footnotes":"","_members_access_role":[],"_members_access_error":""},"folder":[35],"class_list":["post-2147","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages\/2147","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/comments?post=2147"}],"version-history":[{"count":86,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages\/2147\/revisions"}],"predecessor-version":[{"id":6125,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/pages\/2147\/revisions\/6125"}],"wp:attachment":[{"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/media?parent=2147"}],"wp:term":[{"taxonomy":"folder","embeddable":true,"href":"https:\/\/www.rareminds.org\/es\/wp-json\/wp\/v2\/folder?post=2147"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}