[et_pb_section fb_built=”1″ theme_builder_area=”post_content” _builder_version=”4.27.5″ _module_preset=”default” title_text=”0_Medical_Healthcare_1280x720″ background_video_mp4=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/0_Medical_Healthcare_1280x720.mp4″ hover_enabled=”0″ sticky_enabled=”0″ global_module=”139″ saved_tabs=”all”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” custom_padding=”161px||161px||true|false” hover_enabled=”0″ sticky_enabled=”0″][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”4_4″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” _dynamic_attributes=”content” header_font=”–et_global_heading_font|700|||||||” header_font_size=”61px” header_line_height=”1.6em” hover_enabled=”0″ sticky_enabled=”0″ header_text_color=”#FFFFFF”]@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IjxoMT4iLCJhZnRlciI6IjwvaDE+In19@[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_5,2_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”3_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n
Facioscapulohumeral muscular dystrophy (FSHD) is a disorder characterized by muscle weakness and wasting (atrophy). The condition gets its name from the muscles most commonly affected:<\/span><\/p>\n Hamstring and trunk muscles are affected early on but are less well recognized. Other arm and leg muscles are frequently eventually affected in the course of the disease. Some of the symptoms are shown in the diagram provided. For a fuller understanding, please refer to the FSHD Society link below.<\/span><\/p>\n Symptoms usually appear before age 20, but can begin in infancy or later in adulthood. Severity of the condition varies widely and some people with the disease allele remain asymptomatic.\u00a0<\/span><\/p>\n FSHD is most typically characterized by relatively slow disease progression. Specific symptoms and findings may also vary in range and severity, including among affected members of the same family. Life expectancy is not shortened. FSHD is usually inherited as an autosomal dominant genetic condition\u2019 \u2013 NORD National Organisation for Rare Disorders<\/span><\/p>\n It was estimated by a European study in 2013 (taking a prevalence rate of 12\/100,000 people with FSHD and the population at that time of c. 67.33 million in the UK) that there could be c.8000 FSHD patients in the UK.<\/span><\/p>\n [\/et_pb_text][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/living-with-fshd\/understanding-fshd\/symptoms\/)” url_new_window=”on” button_text=”FSHD Society” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_button][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/Screenshot-2026-02-06-at-11.28.17.png” _builder_version=”4.27.5″ _module_preset=”default” max_width=”345px” module_alignment=”center” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_position=”top” sticky_limit_bottom=”row” sticky_position_last_edited=”on|desktop” sticky_enabled=”0″ sticky_position_tablet=”none” sticky_position_phone=”none”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” column_structure=”1_2,1_2″ theme_builder_area=”post_content”][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/Screenshot-2026-02-13-at-10.23.33.png” _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” hover_enabled=”0″ sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]<\/p>\n [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]FSHD is genetic. The cause is an abnormality in your DNA (on chromosome 4 for FSHD Type 1 and on chromosome 18 for FSHD Type 2). You are born with it, but usually symptoms don\u2019t show up until later. You likely inherited it from a parent, and if you have siblings, they could also have it. You can pass it on to your children (50% chance for Type 1 and 25-50% for Type 2).<\/p>\n That being said, an estimated one-third of people with FSHD did NOT get FSHD from a parent. The DNA abnormality occurred in them for the first time. No one knows why. The only way to know for sure if you or any family members have FSHD is with a genetic test. <\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ theme_builder_area=”post_content” _builder_version=”4.27.5″ _module_preset=”default”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content”][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”4_4″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” column_structure=”1_2,1_2″][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]<\/p>\n Getting genetic confirmation is very important, as it helps us better understand your condition.<\/span><\/p>\n If the diagnosis is positive, we strongly recommend registering with the UK FSHD Registry. You do not need a formal diagnosis to register\u2014if FSHD runs in your family and you think you may have it, you can still sign up. An adult can register on behalf of anyone under 16.<\/span><\/p>\n [\/et_pb_text][et_pb_button button_url=”https:\/\/www.fshdsociety.org\/get-involved\/world-fshd-day\/” url_new_window=”on” button_text=”UK FSHD Registry” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″][\/et_pb_button][\/et_pb_column][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]<\/p>\n FSHD is formally diagnosed through a blood test. Most clinical trials will request this as a formal confirmation of the condition. There are saliva tests available via a research study run by the Peter Jones and Takako Jones lab. Note: these are not currently formally recognised.<\/span><\/p>\n [\/et_pb_text][et_pb_button button_url=”https:\/\/myfshd.org\/test-for-fshd\/” url_new_window=”on” button_text=”FSHD Testing” _builder_version=”4.27.5″ _module_preset=”default” custom_button=”on” button_text_color=”#FFFFFF” button_bg_color=”#122e62″ button_border_width=”0px” button_border_color=”RGBA(255,255,255,0)” button_border_radius=”11px” button_font=”–et_global_body_font|600|||||||” button_icon_color=”#FFFFFF” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ theme_builder_area=”post_content” _builder_version=”4.27.5″ _module_preset=”default”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content”][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”4_4″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” column_structure=”1_2,1_2″][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/303.jpg” _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” hover_enabled=”0″ sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″ ul_line_height=”1.6em”]<\/p>\n You can\u2019t prevent FSHD, but there are many things you can do for your health. There are medical professionals to guide you, but many do not know about FSHD, so you will have to find professionals who are willing to help.<\/span><\/p>\n <\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” column_structure=”1_2,1_2″][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″ ul_line_height=”1.6em”]<\/p>\n [\/et_pb_text][\/et_pb_column][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_image src=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/2148302103.jpg” _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” hover_enabled=”0″ sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ theme_builder_area=”post_content” _builder_version=”4.27.5″ _module_preset=”default”][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” theme_builder_area=”post_content” column_structure=”1_2,1_2″][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_slider arrows_custom_color=”#122e62″ dot_nav_custom_color=”#122e62″ _builder_version=”4.27.5″ _module_preset=”default” custom_margin=”0px||0px||true|false” custom_padding=”0px||0px||true|false” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″][et_pb_slide image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/fshdday-01-2022.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”on” hover_enabled=”0″ global_colors_info=”{}” sticky_transition=”on” theme_builder_area=”post_content” background_color=”#FFFFFF” sticky_enabled=”0″ title_text=”fshdday-01-2022″][\/et_pb_slide][et_pb_slide image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/fshdday-02-2023.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”on” hover_enabled=”0″ global_colors_info=”{}” sticky_transition=”on” theme_builder_area=”post_content” title_text=”fshdday-02-2023″ sticky_enabled=”0″ background_color=”#FFFFFF”][\/et_pb_slide][et_pb_slide image=”https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/wp-content\/uploads\/2026\/02\/fshdday-01-2022.png” _builder_version=”4.27.5″ _module_preset=”default” header_text_color=”#122e62″ header_font_size=”16px” background_enable_color=”on” hover_enabled=”0″ global_colors_info=”{}” sticky_transition=”on” theme_builder_area=”post_content” title_text=”fshdday-01-2022″ background_color=”#FFFFFF” sticky_enabled=”0″][\/et_pb_slide][\/et_pb_slider][\/et_pb_column][et_pb_column _builder_version=”4.27.5″ _module_preset=”default” type=”1_2″ theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” header_2_font=”–et_global_heading_font|700|||||||” header_2_text_color=”#122e62″ header_2_font_size=”40px” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]<\/p>\n [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” text_font=”–et_global_body_font||||||||” text_text_color=”#122e62″ text_font_size=”21px” text_line_height=”1.6em” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″ ul_line_height=”1.6em”]<\/p>\n FSHD Day is a day when patients, carers and the community can bring awareness to the wider public about FSHD related information. It is a time for everyone to celebrate and bring awareness to the masses.<\/span> [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" What is FSHD?Facioscapulohumeral muscular dystrophy (FSHD) is a disorder characterized by muscle weakness and wasting (atrophy). The condition gets its name from the muscles most commonly affected: face (facio) around the shoulder blades (scapulo) and in the upper arms (humeral) Hamstring and trunk muscles are affected early on but are less well recognized. Other arm […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-135","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/135","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=135"}],"version-history":[{"count":13,"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/135\/revisions"}],"predecessor-version":[{"id":163,"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/135\/revisions\/163"}],"wp:attachment":[{"href":"https:\/\/fshdbeta2-mzkny.projectbeta.co.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=135"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\n
What Causes FSHD? <\/b><\/h2>\n
\u00a0Receiving a Diagnosis<\/b><\/h2>\n
What Can Be Done?<\/b><\/h2>\n
\n
\n
<\/ul>\n
FSHD Day<\/b><\/h2>\n
Join us on World FSHD Day each June 20th. We look forward to celebrating this with you.<\/span><\/p>\n<\/ul>\n