{"id":2400,"date":"2024-04-14T15:22:13","date_gmt":"2024-04-14T14:22:13","guid":{"rendered":"https:\/\/www.rareminds.org\/?page_id=2400"},"modified":"2026-07-29T17:31:54","modified_gmt":"2026-07-29T16:31:54","slug":"living-with-a-rare-condition","status":"publish","type":"page","link":"https:\/\/www.rareminds.org\/ro\/wellbeing-hub\/diagnosis\/living-with-a-rare-condition\/","title":{"rendered":"Tr\u0103ind cu o afec\u021biune rar\u0103"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|desktop&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;90deg&#8221; background_color_gradient_stops=&#8221;#ffffff 70%|gcid-cda4ad62-552d-4861-ac19-bc0028373e46 73%&#8221; custom_margin=&#8221;0px||||false|false&#8221; custom_padding=&#8221;0px|5vw|0px||false|false&#8221; custom_padding_tablet=&#8221;||0px||false|false&#8221; custom_padding_phone=&#8221;||0px||false|false&#8221; background_last_edited=&#8221;on|desktop&#8221; use_background_color_gradient_tablet=&#8221;off&#8221; use_background_color_gradient_phone=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22background_color_gradient_stops%22%93}&#8221;][et_pb_row make_equal=&#8221;on&#8221; module_class=&#8221;reverse-columns-mobile&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec&#8221; width=&#8221;100%&#8221; max_width=&#8221;100%&#8221; module_alignment=&#8221;left&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;|2vw|50px|8vw|false|false&#8221; border_radii=&#8221;off|||200px|&#8221; border_width_right=&#8221;14px&#8221; border_color_right=&#8221;gcid-cf9415ef-e483-4e35-a620-b796a7d52716&#8243; box_shadow_style=&#8221;preset4&#8243; box_shadow_horizontal=&#8221;13px&#8221; box_shadow_vertical=&#8221;0px&#8221; box_shadow_color=&#8221;gcid-9cdde9ee-f44a-4873-b70d-fc2d55a114a2&#8243; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color%22%93,%22gcid-cf9415ef-e483-4e35-a620-b796a7d52716%22:%91%22border_color_right%22%93,%22gcid-9cdde9ee-f44a-4873-b70d-fc2d55a114a2%22:%91%22box_shadow_color%22%93}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; custom_css_main_element=&#8221;display: flex;||justify-content: space-between;||align-items: center;&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#000000&#8243; text_font_size=&#8221;21px&#8221; text_line_height=&#8221;1.5em&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;48px&#8221; header_line_height=&#8221;1.2em&#8221; header_4_font_size=&#8221;22px&#8221; header_4_line_height=&#8221;1.4em&#8221; width=&#8221;70%&#8221; width_tablet=&#8221;70%&#8221; width_phone=&#8221;80%&#8221; width_last_edited=&#8221;on|phone&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_margin_tablet=&#8221;||||false|false&#8221; custom_margin_phone=&#8221;||||false|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;||||false|false&#8221; text_font_size_tablet=&#8221;21px&#8221; text_font_size_phone=&#8221;16px&#8221; text_font_size_last_edited=&#8221;on|phone&#8221; header_font_size_tablet=&#8221;43px&#8221; header_font_size_phone=&#8221;28px&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; header_4_font_size_tablet=&#8221;17px&#8221; header_4_font_size_phone=&#8221;15px&#8221; header_4_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><span><nav aria-label=\"breadcrumbs\" class=\"rank-math-breadcrumb\"><p><span class=\"last\">Home<\/span><\/p><\/nav><\/span><\/p>\n<h1><\/h1>\n<h1><\/h1>\n<h1><\/h1>\n<h1>Living with a rare condition<\/h1>\n<h4>Common rare experiences, coming to terms with a new future and living as well as possible with your condition<\/h4>\n<p>[\/et_pb_text][et_pb_image src=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/02\/Rareminds-Wellbeing-Hub-Website-Mockup-Images-Diagnosis.jpg&#8221; title_text=&#8221;Rareminds-Wellbeing-Hub-Website-Mockup-Images-Diagnosis&#8221; align_tablet=&#8221;left&#8221; align_phone=&#8221;left&#8221; align_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; width=&#8221;350px&#8221; width_tablet=&#8221;200px&#8221; width_phone=&#8221;150px&#8221; width_last_edited=&#8221;on|desktop&#8221; module_alignment=&#8221;right&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|10px||10px|false|false&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; module_alignment_tablet=&#8221;right&#8221; module_alignment_phone=&#8221;left&#8221; module_alignment_last_edited=&#8221;on|tablet&#8221; border_radii=&#8221;on|50%|50%|50%|50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; specialty=&#8221;on&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; padding_right_1=&#8221;2vw&#8221; padding_left_2=&#8221;3vw&#8221; padding_top_bottom_link_1=&#8221;false&#8221; padding_top_bottom_link_2=&#8221;false&#8221; padding_left_right_link_1=&#8221;false&#8221; padding_left_right_link_2=&#8221;false&#8221; padding_1_tablet=&#8221;|0px|||false|false&#8221; padding_2_tablet=&#8221;|||0px|false|false&#8221; padding_1_phone=&#8221;|0px|||false|false&#8221; padding_2_phone=&#8221;|||0px|false|false&#8221; padding_1_last_edited=&#8221;on|desktop&#8221; padding_2_last_edited=&#8221;on|desktop&#8221; module_class=&#8221;reverse-columns-mobile&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; background_enable_color=&#8221;off&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;90deg&#8221; background_color_gradient_stops=&#8221;#ffffff 75%|gcid-cda4ad62-552d-4861-ac19-bc0028373e46 75%&#8221; inner_width_tablet=&#8221;85%&#8221; inner_width_phone=&#8221;85%&#8221; inner_width_last_edited=&#8221;on|tablet&#8221; inner_max_width=&#8221;80%&#8221; inner_max_width_tablet=&#8221;&#8221; inner_max_width_phone=&#8221;&#8221; inner_max_width_last_edited=&#8221;on|tablet&#8221; custom_padding=&#8221;24px|0px||0px|false|false&#8221; custom_padding_tablet=&#8221;24px|0px||0px|false|false&#8221; custom_padding_phone=&#8221;35px|0px||0px|false|false&#8221; background_last_edited=&#8221;on|desktop&#8221; use_background_color_gradient_tablet=&#8221;off&#8221; use_background_color_gradient_phone=&#8221;off&#8221; locked=&#8221;off&#8221; collapsed=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22background_color%22,%22background_color_gradient_stops%22%93}&#8221;][et_pb_column type=&#8221;3_4&#8243; specialty_columns=&#8221;3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_row_inner column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner type=&#8221;1_2&#8243; saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>The rare journey<\/h2>\n<p>Being told you, or the person you care for has a rare condition, can feel a bit like having to get on a ship to go on a journey that you didn\u2019t sign up for, to a destination you cannot see, with no clear map, weather forecast or crew.<\/p>\n<p>It might often involve periods of relative \u2018calm\u2019, followed by periods of intense activity. These might feel a bit like \u2018storms\u2019 where you have to navigate through health crises, changes or treatments.<\/p>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;Merriweather||||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;gcid-56bff3fb-e765-4a78-b152-15a836421100&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||||false|false&#8221; custom_margin_tablet=&#8221;|2vw|||false|false&#8221; custom_margin_phone=&#8221;|2vw|||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22header_5_text_color%22%93}&#8221;]<\/p>\n<h5>It can help to bear in mind that we are often more resilient and adaptive to difficult experiences than we think.<\/h5>\n<p>[\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=&#8221;1_2&#8243; saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_video src=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2025\/01\/Living-with-a-rare-condition.mp4&#8243; src_webm=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2025\/01\/Living-with-a-rare-condition.webm&#8221; image_src=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/05\/rare-condition-video-overlay.png?_t=1715609530&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; border_width_all=&#8221;3px&#8221; border_color_all=&#8221;#FFFFFF&#8221; box_shadow_style=&#8221;preset1&#8243; global_colors_info=&#8221;{}&#8221;][\/et_pb_video][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text ul_position=&#8221;inside&#8221; module_class=&#8221;wh-quote wh-text&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; ul_line_height=&#8221;1.7em&#8221; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Being &#8216;rare&#8217;<\/h2>\n<p>The process of living with, and coming to terms with, the diagnosis of a rare condition is similar in some ways to the challenges of more common conditions.<\/p>\n<p>Challenges similar to more common conditions include:<\/p>\n<ul>\n<li>working out implications for your work or finances<\/li>\n<li>how it will affect your relationships<\/li>\n<li>how you feel about yourself and your identity<\/li>\n<li>coping with difficult symptoms<\/li>\n<li>managing worries about the future<\/li>\n<\/ul>\n<p>Additional challenges associated with a rare condition include:<\/p>\n<p>&nbsp;<\/p>\n<ul>\n<li aria-level=\"1\">less awareness of them amongst both healthcare professionals and the general public<\/li>\n<li aria-level=\"1\">not knowing many other people with your condition<\/li>\n<li aria-level=\"1\">a greater degree of uncertainty about how it will affect you both day-to-day and longer term<\/li>\n<li aria-level=\"1\">fewer, or less clear, treatment options<\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Managing lack of awareness<\/h2>\n<p>The lack of awareness that exists about rare conditions generally, but also for specific rare conditions can be frustrating.<\/p>\n<p>In our society, we are still more used to the idea that we become ill, receive treatment and then recover (or not). As many rare conditions are managed and \u2018lived with\u2019 rather than cured, this can mean people are less likely to remember to ask \u2018how are you?\u2019<\/p>\n<p>Friends and family may not always offer practical or emotional support as readily as they do with more common conditions such as cancer or illnesses they have heard of. They may also find it more difficult to understand what a diagnosis means, and so be less able to respond in a way you find helpful.<\/p>\n<p>Some health professionals may not have heard of your condition. This can be frustrating and anxiety-provoking as we are often brought up to believe that doctors are always the experts.<\/p>\n<h5><strong>What helps?<\/strong><\/h5>\n<p>There may be times when you need to decide when, or how much, to say about the rare condition you are impacted by. This might be socially, at work, or with healthcare professionals.<\/p>\n<p>If you decide you want to say something, having a short verbal summary that describes your condition that you can then &#8216;adapt&#8217; for the situation you are in can be very empowering.<\/p>\n<p>We give some more information about deciding what you want to say here in <a href=\"https:\/\/www.rareminds.org\/wellbeing-hub\/relationships\/talking-about-a-rare-condition\/\">Talking about your condition<\/a><\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Becoming an &#8216;expert by experience&#8217;<\/h2>\n<p><span style=\"font-weight: 400;\">Some people impacted by rare conditions go on to develop knowledge and expertise about their condition.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">This can help you discuss and make more informed choices with your healthcare professionals about treatment options, care, or managing certain symptoms.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">This can feel very empowering. At other times, it might feel very daunting to be taking such an active role in decisions about your own, or another person&#8217;s, future health and wellbeing.<\/span><\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>The relationship between physical and mental health<\/h2>\n<p><span style=\"font-weight: 400;\">Our mind and body are very linked. How you feel physically can have a big impact on mood, for example, if you are in pain or not. Equally, if you are feeling anxious or low, it can also impact your physical health.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Some rare conditions biologically affect mental health and wellbeing. This might be because of how they impact brain chemistry, thinking or hormones. If this is an aspect of your condition, your doctor should be able to give you more information about this.\u00a0\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It&#8217;s not unusual to experience emotions not just as &#8216;feelings&#8217;, but physically too. For example, having little or no energy when we are depressed, tummy upsets when we are anxious, or headaches if we are stressed.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Most rare conditions have the capacity to indirectly impact mental health and wellbeing as a result of the challenges that can be involved in living with them.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The relationship between our physical and mental health can be quite complicated!\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<h5>What helps?<\/h5>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Be aware of the ways in which you or a family member manage emotions, this can help you work out whether something might be an emotional response, a physical symptom, or a combination of both.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">If your rare condition affects mood or thinking as one of its symptoms, this aspect should be monitored and treated as part of your care.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Talk with people you trust and know you to try and understand why you or a family member is feeling, or behaving, in a particular way.<\/span><\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_code _builder_version=&#8221;4.27.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<iframe style=\"border-radius:12px\" src=\"https:\/\/open.spotify.com\/embed\/episode\/5hfGsCaWADRgU64eo11DQq?utm_source=generator\" width=\"100%\" height=\"352\" frameBorder=\"0\" allowfullscreen=\"\" allow=\"autoplay; clipboard-write; encrypted-media; fullscreen; picture-in-picture\" loading=\"lazy\"><\/iframe>[\/et_pb_code][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>All in your head?<\/h2>\n<p><span style=\"font-weight: 400;\">Some rare conditions initially present with symptoms that are very similar to common mental health problems. This means they may be initially mis-diagnosed. Some people also have health worries (or worries about a family member) dismissed as &#8216;all in their head&#8217;.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">If either has happened to you, this is likely to have been very upsetting. It can take time to rebuild confidence in your own understanding of yourself.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It can also take time to feel more confident again in talking about your mental wellbeing to healthcare professionals.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<h5>What helps?<\/h5>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Remember that physical and mental health are very linked. It can take time to work out &#8216;what\u2019s to do with what\u2019.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Talking to people you know and trust can help you become clearer.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">If you are struggling with your mental wellbeing (or worried about the person you help care for), let a healthcare professional you feel comfortable with know.<\/span><\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Living with uncertainty<\/h2>\n<p><span style=\"font-weight: 400;\">Rare conditions often involve a lot of uncertainty. This includes:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>macro uncertainties<\/b><span style=\"font-weight: 400;\"> such as the impact of the condition over time, life expectancy, or what treatments are available<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>micro uncertainties<\/b><span style=\"font-weight: 400;\"> such as if it will be a good or bad day for symptoms, when an appointment date will arrive, or which doctor will be in the clinic<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">As humans we don&#8217;t like too much uncertainty so living with these can be pretty challenging.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Learning techniques to help cope with uncertainty are important for your mental wellbeing. We talk more about <\/span><span style=\"font-weight: 400;\"><a href=\"https:\/\/www.rareminds.org\/wellbeing-hub\/uncertainty-change-loss\/\">uncertainty, change and loss here<\/a>.<\/span><\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Looking after your general health<\/h2>\n<p><span style=\"font-weight: 400;\">Managing and living with the impact of a rare condition can take up a lot of time and energy.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It can also mean that your general health or wellbeing sometimes takes a back-seat. Try not to let this happen (even though this might be hard!)<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Looking after your underlying physical and mental health is going to help you feel more resilient and more able to cope with the demands of your rare condition.<\/span><\/p>\n<p>[\/et_pb_text][et_pb_text module_id=&#8221;highlight&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;0c38199e-3a1d-4d5d-826d-ef93f305cb70&#8243; custom_margin=&#8221;||39px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2><b>What helps?<\/b><\/h2>\n<h3><b>Make time for things you enjoy<\/b><\/h3>\n<ul>\n<li><span style=\"font-weight: 400;\">This includes hobbies, activities or &#8216;small things&#8217; in your day such as a chat with a friend.<\/span><\/li>\n<li><span style=\"font-weight: 400;\">Make regular time in a day or week to do something you enjoy.<\/span><\/li>\n<li><span style=\"font-weight: 400;\">This could be something simple like making a really good cup of tea.<\/span><\/li>\n<li><span style=\"font-weight: 400;\">It could also be listening to music, making time for your favourite TV programme, or a catch-up call with a friend.<\/span><\/li>\n<\/ul>\n<h3><b>Look after your general physical health<\/b><\/h3>\n<ul>\n<li><span style=\"font-weight: 400;\">A rare condition can become very \u2018front and centre\u2019 <\/span><span style=\"font-weight: 400;\">Looking after your general health supports your mental wellbeing.<\/span><\/li>\n<li><span style=\"font-weight: 400;\">Find ways to have enough sleep\/rest and eat as well as possible, and have some exercise and movement. This all helps your mental wellbeing.<\/span><\/li>\n<li><span style=\"font-weight: 400;\">Physical and mental health go \u2018hand in hand\u2019. Don\u2019t let your mental wellbeing be last on the list! <\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<h3>Accept that some things you can control, but others you can&#8217;t<\/h3>\n<ul>\n<li><span style=\"font-weight: 400;\">Remind yourself that you are doing the best that you can.<\/span><span style=\"font-weight: 400;\"><\/span><\/li>\n<li><span style=\"font-weight: 400;\">Learn some coping strategies from &#8216;<a href=\"#\">You and your feelings<\/a>&#8216; to help manage difficult feelings and situations.<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<p>[\/et_pb_text][et_pb_text module_class=&#8221;wh-text &#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; header_2_font_size_phone=&#8221;18px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>You and your support network<\/h2>\n<p><span style=\"font-weight: 400;\">We all need other people to help cope with life&#8217;s challenges.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Building a &#8216;network of support&#8217; for your mental wellbeing will help you to cope with the impact of your rare condition over time, whatever that involves. Feeling connected to other people facing similar or related challenges can also help you feel less &#8216;on your own&#8217;.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Your support network might look like different things at different times. It could include a mixture of personal and professional connections.<\/span><\/p>\n<h5><b>Your support network might include:<\/b><\/h5>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">friends and family members<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">religious or cultural communities or leaders<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">rare condition groups and organisations<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">healthcare professionals including for example, physio for pain, dieticians, or child\/adult psychologists<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">support from a local\/national community, for example, one for LGBTQI+ people, parents of children with SEN, young people or carers<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">advisors for specific issues like money worries, disability aids or housing<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">social workers or key workers<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">couples counsellors and\/or family therapists<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">Remember that your particular support network will be specific to you and your rare condition. We give more examples in our<\/span><span style=\"font-weight: 400;\"> section &#8216;<a href=\"\/wellbeing-hub\/sources-of-support\">Sources of support<\/a>&#8216;.<\/span><\/p>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Therapist Tip&#8221; image=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/noun-tips-2448957-FBB717.png&#8221; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;18px&#8221; body_font_size=&#8221;16px&#8221; body_link_font=&#8221;|600|||on||||&#8221; body_link_text_color=&#8221;#000000&#8243; custom_padding=&#8221;20px|20px|20px|20px|true|true&#8221; link_option_url=&#8221;#&#8221; body_font_size_tablet=&#8221;14px&#8221; body_font_size_phone=&#8221;14px&#8221; body_font_size_last_edited=&#8221;on|desktop&#8221; border_radii=&#8221;on|30px|30px|30px|30px&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;gcid-56bff3fb-e765-4a78-b152-15a836421100&#8243; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22border_color_all%22,%22border_color_all%22,%22border_color_all%22,%22border_color_all%22%93,%22gcid-9cdde9ee-f44a-4873-b70d-fc2d55a114a2%22:%91%22icon_color%22%93}&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221;]<\/p>\n<p>Finding support for your mental wellbeing can take time. There is not &#8216;one size fits all&#8217; so persevere to find the right people or approaches for you.<\/p>\n<p>[\/et_pb_blurb][et_pb_video src=&#8221;https:\/\/youtu.be\/ibCRhCTesv0?si=jp9gTPtiETKMrfbe&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_video][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; header_6_line_height=&#8221;1.2em&#8221; custom_margin=&#8221;-2%||||false|false&#8221; custom_margin_tablet=&#8221;-3%||||false|false&#8221; custom_margin_phone=&#8221;-3%||||false|false&#8221; custom_margin_last_edited=&#8221;on|desktop&#8221; header_6_font_size_tablet=&#8221;&#8221; header_6_font_size_phone=&#8221;12px&#8221; header_6_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h6 style=\"text-align: right;\"><strong>Glenn&#8217;s story: Coming to terms with my rare condition<\/strong><\/h6>\n<p>[\/et_pb_text][et_pb_code _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<style><!-- [et_pb_line_break_holder] --><\/p>\n<h3 id=\"paceyourself\"><!-- [et_pb_line_break_holder] -->  <span style=\"font-weight: 700;\">Pace Yourself<\/span><!-- [et_pb_line_break_holder] --><\/style>\n<p>[\/et_pb_code][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.27.2&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_5_font=&#8221;Merriweather|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; custom_margin=&#8221;||||false|false&#8221; custom_margin_tablet=&#8221;||||false|false&#8221; custom_margin_phone=&#8221;||||true|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;5%|5%|5%|5%|true|true&#8221; custom_padding_tablet=&#8221;8%||||false|true&#8221; custom_padding_phone=&#8221;20%|5%|9%|5%|false|true&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;18px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; custom_css_before=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||background: #D9EBDF;||border-radius: 0 0 0 30px;&#8221; border_radii=&#8221;on|30px|30px|30px|30px&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;gcid-56bff3fb-e765-4a78-b152-15a836421100&#8243; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22border_color_all%22%93}&#8221; custom_css_before_last_edited=&#8221;on|phone&#8221; custom_css_before_tablet=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||background: #D9EBDF;||border-radius: 0 0 0 30px;&#8221; custom_css_before_phone=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||border-radius: 0 0 0 30px;&#8221;]<\/p>\n<h2>Resources &amp; useful links<\/h2>\n<p><a href=\"https:\/\/genepeople.org.uk\/telling-children-about-a-genetic-condition\/\" target=\"_blank\" rel=\"noopener\">GENEPEOPLE<\/a> <span style=\"font-weight: 400;\">offers information for parents and carers of children with rare conditions, including a genetic counsellor helpline.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"http:\/\/www.geneticalliance.org.uk\" target=\"_blank\" rel=\"noopener\">Genetic Alliance UK<\/a> for help in finding a rare disease organisation or group.<\/span><\/p>\n<p><strong><a href=\"https:\/\/hubofhope.co.uk\/\" target=\"_blank\" rel=\"noopener\">Hub of Hope <\/a><\/strong><span style=\"font-weight: 400;\">is a database that <\/span><span style=\"font-weight: 400;\">brings local, national, peer, community, charity, private and NHS mental health support and services together in one place. You can search by postcode for support in your area. <\/span><span style=\"font-weight: 400;\"><a href=\"http:\/\/www.geneticalliance.org.uk\" target=\"_blank\" rel=\"noopener\"><\/a><\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/www.samebutdifferentcic.org.uk\/rareresources\/livingwithararedisease\/navigation\" target=\"_blank\" rel=\"noopener\">Same But Different<\/a> provide a range information on living with a rare condition including benefits, respite care, accessing local authority support.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/www.undiagnosed.org.uk\/support-information\/\" target=\"_blank\" rel=\"noopener\">SWAN UK<\/a> provide support and information for parents of children with undiagnosed genetic conditions.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/rarechromo.org\/media\/familyguides\/English\/After%20Diagnosis%20what%20next%20FTNW.pdf\" target=\"_blank\" rel=\"noopener\">Unique<\/a> provides support to parents and carers of children with rare chromosomal disorders. They have a guide on \u2018After Diagnosis &#8211; What Next?\u2019<\/span><\/p>\n<h2>Recommended Reading<\/h2>\n<p><a href=\"https:\/\/www.amazon.co.uk\/Positively-Rare-Empowering-Community-Lemonade\/dp\/1777917948\/\" target=\"_blank\" rel=\"noopener\">Positively Rare: Empowering Stories from the Rare Disease Community<\/a> (Lemonade Life Series<\/p>\n<p><span style=\"font-weight: 400;\"><\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][pac_divi_table_of_contents title=&#8221;Contents&#8221; collapse_when_sticky=&#8221;on&#8221; marker_position=&#8221;outside&#8221; level_markers_2=&#8221;icons&#8221; icon_marker_2=&#8221;&#x5e;||divi||400&#8243; indent_amount_2=&#8221;0px&#8221; allow_collapse_minimize_tablet=&#8221;off&#8221; allow_collapse_minimize_phone=&#8221;on&#8221; allow_collapse_minimize_last_edited=&#8221;on|desktop&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; sticky_position_phone=&#8221;none&#8221; sticky_position_last_edited=&#8221;off|phone&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22title_container_bg_color%22%93,%22gcid-cf9415ef-e483-4e35-a620-b796a7d52716%22:%91%22body_area_text_link_color__hover%22%93}&#8221;][\/pac_divi_table_of_contents][et_pb_text disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|700|||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_3_font_size=&#8221;23px&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; width=&#8221;250px&#8221; custom_margin=&#8221;||26px||false|false&#8221; custom_padding=&#8221;|||15px|false|false&#8221; sticky_limit_bottom=&#8221;body&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Related pages<\/h3>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Looking for a diagnosis&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjIyNDcifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22%93}&#8221; background__hover_enabled=&#8221;on|hover&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; border_radii__hover_enabled=&#8221;off|hover&#8221; border_width_all__hover_enabled=&#8221;off|desktop&#8221; border_width_all__hover=&#8221;1px&#8221;]<\/p>\n<p>Tips for waiting for and going for genetic testing<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Early days&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjIzMzYifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Receiving a diagnosis, reimagining the future, pacing yourself<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Living with a rare condition&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0MDAifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Rare challenges, \u2018expert by experience\u2019, living as well as possible<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;You and your emotions&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0MTMifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Acknowledging your feelings, how to manage them, finding hope<\/p>\n<p>[\/et_pb_blurb][et_pb_text disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|700|||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_3_font_size=&#8221;23px&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; width=&#8221;250px&#8221; custom_margin=&#8221;30px||26px||false|false&#8221; custom_padding=&#8221;|||15px|false|false&#8221; sticky_limit_bottom=&#8221;body&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Section Guide<\/h3>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Diagnosis&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;wh-section-title&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjIyNDUifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 6px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221; background__hover_enabled=&#8221;on|hover&#8221; background_color__hover=&#8221;#cde7d6&#8243; background_enable_color__hover=&#8221;on&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; custom_padding__hover=&#8221;|||10px|false|false&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Uncertanty change and loss&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0NzUifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Relationships&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI2NjkifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;You and your feelings&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI3MjYifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22,%22background_color__hover%22%93}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Coping with pain&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjUwOTQifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Fatigue, tiredness &#038; exhaustion&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjUxOTkifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Navigating healthcare&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1em&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;\/wellbeing-hub\/navigating-healthcare&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Sources of support&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;\/wellbeing-hub\/sources-of-support&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Deciding to have children (or not)&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjU4NDUifX0=@&#8221; hover_enabled=&#8221;0&#8243; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221; _dynamic_attributes=&#8221;link_option_url&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_blurb][\/et_pb_column][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p><nav aria-label=\"breadcrumbs\" class=\"rank-math-breadcrumb\"><p><span class=\"last\">Home<\/span><\/p><\/nav> Living with a rare condition Common rare experiences, coming to terms with a new future and living as well as possible with your conditionThe rare journey Being told you, or the person you care for has a rare condition, can feel a bit like having to get on a ship to go on a [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":2245,"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-2400","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/pages\/2400","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/comments?post=2400"}],"version-history":[{"count":31,"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/pages\/2400\/revisions"}],"predecessor-version":[{"id":6074,"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/pages\/2400\/revisions\/6074"}],"up":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/pages\/2245"}],"wp:attachment":[{"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/media?parent=2400"}],"wp:term":[{"taxonomy":"folder","embeddable":true,"href":"https:\/\/www.rareminds.org\/ro\/wp-json\/wp\/v2\/folder?post=2400"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}