{"id":27227,"date":"2024-10-03T17:22:47","date_gmt":"2024-10-03T16:22:47","guid":{"rendered":"https:\/\/www.devon.gov.uk\/support-schools-settings-new\/send\/areas-of-need\/sensory-and-or-physical\/physical-difficulties\/conditions\/muscular-dystrophy\/"},"modified":"2025-07-16T12:08:41","modified_gmt":"2025-07-16T11:08:41","slug":"muscular-dystrophy","status":"publish","type":"page","link":"https:\/\/www.devon.gov.uk\/support-schools-settings\/send\/areas-of-need\/sensory-and-or-physical\/physical-difficulties\/conditions\/muscular-dystrophy\/","title":{"rendered":"Muscular Dystrophy"},"content":{"rendered":"\n<p><span data-contrast=\"auto\">Muscular Dystrophy (MD) is a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">&nbsp;<\/span><\/p>\n\n\n\n<p><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">&nbsp;<\/span><span data-contrast=\"auto\">MD is a progressive condition, which means it gets worse over time. It often begins by affecting a particular group of muscles, before affecting the muscles more widely.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">&nbsp;<\/span><\/p>\n\n\n\n<p><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">&nbsp;<\/span><span data-contrast=\"auto\">There are many different types of MD, 4 more common types are:<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">&nbsp;<\/span><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><span data-contrast=\"auto\">Duchenne muscular dystrophy<\/span><span data-contrast=\"auto\"> \u2013 The most common and most severe type of MD. It causes muscles weakness mainly in the legs and upper arms. DMD usually affects boys rather than girls however, in rare cases, girls or women with the Duchenne gene can develop muscle weakness. The weakness starts early in childhood and gradually increases, affecting the child&#8217;s ability to walk.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Becker muscular dystrophy<\/span><span data-contrast=\"auto\"> \u2013 Signs and symptoms are similar to those of Duchenne muscular dystrophy but tend to be milder and progress more slowly. Symptoms generally begin in the teens but might not occur until the mid-20s or later.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:0,&quot;335559739&quot;:0}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Limb-girdle muscular dystrophy<\/span><span data-contrast=\"auto\"> \u2013 Causes weakness in the muscles around the top of the arms and legs, which is why &#8216;limb girdle&#8217; is used in the name of this condition (hip and shoulder muscles are usually affected first). People with this type of muscular dystrophy might have difficulty lifting the front part of the foot and so might trip frequently. Onset usually begins in childhood or the teenage years.<\/span> <span data-contrast=\"auto\">They can affect men or women.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:0,&quot;335559739&quot;:0}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Facioscapulohumeral muscular dystrophy<\/span><span data-contrast=\"auto\"> \u2013 Causes muscle weakness which typically begins in the face, hip, and shoulders. The shoulder blades might stick out like wings when arms<\/span> <span data-contrast=\"auto\">are raised. Onset usually occurs in the teenage years but can begin in childhood or as late as age 50.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:0,&quot;335559739&quot;:0}\">&nbsp;<\/span><\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\"><b><span data-contrast=\"auto\">Symptoms<\/span><\/b><\/h2>\n\n\n\n<p><span data-contrast=\"auto\">The main symptom of MD is muscle weakness. The muscle weakness itself may be mild, moderate, or severe, this varies between the different types of MD.<\/span> <span data-contrast=\"auto\">The different types of MD vary as to how quickly or slowly the weakness progresses.<\/span><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><\/p>\n\n\n\n<p><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><span data-contrast=\"auto\">Another common symptom of MD is having a difficulty controlling movement.<\/span><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><\/p>\n\n\n\n<p><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><span data-contrast=\"auto\">Sometimes there may be other symptoms depending on the type of MD. These are:<\/span><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><span data-contrast=\"auto\">Muscle wasting &#8211; in which the muscles become thin.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Muscle hypertrophy &#8211; in which the muscles are bulkier than normal, even though they work less well.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Aches or pains in the muscles.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Contractures &#8211; in which joints are tight, due to tightness of the muscles or reduced movement of the joints.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Developmental delay in a child (this means that the child&#8217;s &#8216;milestones&#8217; of development are later than usual).<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Some types of MD can affect the heart. In some cases, there may be symptoms of heart disease without much in the way of muscle weakness.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<\/ul>\n\n\n\n<p><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><span data-contrast=\"auto\">Symptoms may start anywhere between birth and middle age, depending on which type of MD is involved.<\/span><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><\/p>\n\n\n\n<p><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><span data-contrast=\"auto\">There are also differences as to which parts of the body are affected. Different types of MD affect different muscle groups.<\/span><span data-ccp-props=\"{&quot;335559685&quot;:57}\">&nbsp;<\/span><\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><span data-ccp-props=\"{}\">&nbsp;<\/span><b><span data-contrast=\"auto\">Education Strategies<\/span><\/b><\/h2>\n\n\n\n<ul class=\"wp-block-list\">\n<li><span data-contrast=\"auto\">Children and young people with MD are all different and will need personalised\/catered care and\/or equipment to support their specific levels of need. Due to the nature of MD, changes will have to be made to the care and equipment as their needs change.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Consider accessibility of the school site: is there step free access? Lifts? Can the child or young person move independently around the site? Is there wheelchair access should the child\u2019s mobility deteriorate?<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Is the toilet appropriate for the child or young person to use to maintain their health and dignity? Read the Changing Places guide, using the following link to create a suitable environment: <\/span><a href=\"https:\/\/www.changing-places.org\/\" rel=\"noopener\"><span data-contrast=\"none\">Changing Places Toilets (changing-places.org)<\/span><\/a><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Will they need an Intimate Care Plan? Use our templates to create a policy and strategy for your setting using the following link: <\/span><a href=\"https:\/\/www.devon.gov.uk\/support-schools-settings\/send\/areas-of-need\/sensory-and-or-physical\/physical-difficulties\/intimate-care\/\"><span data-contrast=\"none\">Intimate care \u2013 Support for schools and settings (devon.gov.uk)<\/span><\/a><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Do they struggle with fatigue management? It is important to teach the child\/young person ways to conserve energy and pace themselves throughout the school day. It may also be necessary to provide a modified timetable and\/or allow for rest breaks.&nbsp; The following link provides strategies to support fatigue: <\/span><a href=\"https:\/\/www.devon.gov.uk\/support-schools-settings\/send\/areas-of-need\/sensory-and-or-physical\/physical-difficulties\/managing-fatigue\/\"><span data-contrast=\"none\">Managing fatigue \u2013 Support for schools and settings (devon.gov.uk)<\/span><\/a><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Are there reasonable adjustments for the child\/young person? For example, physiotherapy programmes may need to be scheduled into their school timetable. Or they may have medical appointments\/surgeries that take place during school hours.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li><span data-contrast=\"auto\">Due to the nature of MD, it can affect a child\u2019s mental health and outlook on themselves. Does the child understand what is happening to them? Are there strategies in place to support their mental health and wellbeing?<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n\n\n\n<li>Action Duchenne have created a useful inclusive PE guide. This can be downloaded using the following link:\u00a0<a href=\"https:\/\/www.actionduchenne.org\/inclusive-pe-lessons\/\" rel=\"noopener\">Inclusive PE lessons \u2013 Action Duchenne<\/a>\u00a0Please note, it is important to discuss each child\u2019s individual needs with their own Physiotherapist or Occupational Therapist.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\"><b><span data-contrast=\"auto\">Help for schools with pupils with MD<\/span><\/b><\/h2>\n\n\n\n<p><a href=\"https:\/\/www.musculardystrophyuk.org\/get-support\/everyday-living\/education\/access-to-schools\" rel=\"noopener\"><span data-contrast=\"none\">Access to schools | Muscular Dystrophy UK<\/span><\/a><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n\n\n\n<p><a href=\"https:\/\/www.musculardystrophyuk.org\/get-support\/everyday-living\/education\/emotional-support\" rel=\"noopener\"><span data-contrast=\"none\">Emotional support | Muscular Dystrophy UK<\/span><\/a><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Muscular Dystrophy (MD) is a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability.&nbsp; &nbsp;MD [&hellip;]<\/p>\n","protected":false},"author":2616,"featured_media":0,"parent":24527,"menu_order":5,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-27227","page","type-page","status-publish","hentry"],"acf":[],"publishpress_future_action":{"enabled":false,"date":"2026-05-13 18:54:52","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/pages\/27227","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/users\/2616"}],"replies":[{"embeddable":true,"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/comments?post=27227"}],"version-history":[{"count":4,"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/pages\/27227\/revisions"}],"predecessor-version":[{"id":33540,"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/pages\/27227\/revisions\/33540"}],"up":[{"embeddable":true,"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/pages\/24527"}],"wp:attachment":[{"href":"https:\/\/www.devon.gov.uk\/support-schools-settings\/wp-json\/wp\/v2\/media?parent=27227"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}