{"id":2871,"date":"2022-04-06T15:43:19","date_gmt":"2022-04-06T14:43:19","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=2871"},"modified":"2026-02-17T11:24:23","modified_gmt":"2026-02-17T11:24:23","slug":"what-is-usher-syndrome","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/usher-syndrome\/what-is-usher-syndrome\/","title":{"rendered":"What is Usher syndrome?"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page tells you about Usher syndrome, covering symptoms and the different types of the condition.&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box  ctaBox    is-style-textured-grey-tint-10  align-right  size-medium\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Get our emails in your inbox<\/h2>\n\n\n\n<p>Join over 87,000 others, and be part of the movement driving change for disabled people. <\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/www.sense.org.uk\/get-our-emails-in-your-inbox\/\" class=\"button  button--primary\">Sign up now<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li><a href=\"#whatisusher\">What is Usher syndrome?<\/a><\/li>\n\n\n\n<li><a href=\"#symptoms\">What are the symptoms of Usher syndrome?<\/a>&nbsp;<\/li>\n\n\n\n<li><a href=\"#howcommon\">How common is Usher syndrome?<\/a>&nbsp;<\/li>\n\n\n\n<li><a href=\"#inheriting\">What are the chances of inheriting Usher syndrome?<\/a>&nbsp;<\/li>\n\n\n\n<li><a href=\"#genes\">Can I pass Usher syndrome down to my children?&nbsp;<\/a><\/li>\n\n\n\n<li><a href=\"#prevention\">Can Usher syndrome be prevented?<\/a><\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"whatisusher\"><strong>What is Usher syndrome?<\/strong>&nbsp;<\/h2>\n\n\n\n<p>Usher syndrome is an inherited condition, meaning it is present from birth.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Inherited conditions are caused by changes in specific genes you inherit from your parents.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Genes are sets of information that instruct the growth and development of every cell in every part of your body.&nbsp;<\/p>\n\n\n\n<p>Changes in specific genes disrupt the healthy growth and development of the hair cells of the inner ear and the cells in the retina of the eyes, causing Usher syndrome.&nbsp;<\/p>\n\n\n\n<p>It can take years for symptoms to appear and is usually diagnosed in older children or teenagers.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"symptoms\"><strong>What are the symptoms of Usher syndrome?<\/strong>&nbsp;<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Hearing loss<\/strong>&nbsp;<\/h3>\n\n\n\n<p>Usher syndrome causes sensorineural hearing loss, which damages the inner ears.&nbsp;<\/p>\n\n\n\n<p>Some people can manage their hearing loss with <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology\/assistive-technology-for-people-with-hearing-loss\/\">hearing aids or cochlear implants<\/a>. Others lose their hearing completely.&nbsp;&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Sight loss<\/strong>&nbsp;<\/h3>\n\n\n\n<p>Usher syndrome causes <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/blindness-and-visual-impairment\/\">sight loss<\/a> through a condition called retinitis pigmentosa. <\/p>\n\n\n\n<p>Retinitis pigmentosa makes it hard to see at night or when it\u2019s dark or dim, and causes loss of peripheral (side) vision.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Sight loss happens over time until you\u2019re left with a small area of central vision. This is known as tunnel vision.&nbsp;<\/p>\n\n\n\n<p>Some people also notice that they cannot make out different colours as clearly as before.&nbsp;<\/p>\n\n\n\n<p>Some people retain their central vision and a restricted visual field into their 50s.&nbsp;<\/p>\n\n\n\n<p>Others lose much more of their sight in early adulthood.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Eventually, most people with retinitis pigmentosa lose most of their\u202fsight.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Balance problems<\/strong>&nbsp;<\/h3>\n\n\n\n<p>For some people, Usher syndrome can cause problems with balance because of damage to the inner ears.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Other symptoms<\/strong>&nbsp;<\/h3>\n\n\n\n<p>Some people may also get the following eye conditions, which can cause further sight deterioration:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Cataracts: cloudy patches on the lens of your eye. <\/li>\n\n\n\n<li>Macular oedema: leakage of fluid in the blood vessels in the part of retina called the macula, which causes blurry vision and affects reading.&nbsp; This affects as many as 50% of people with Usher.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"howcommon\"><strong>How common is Usher syndrome?<\/strong>&nbsp;<\/h2>\n\n\n\n<p>Usher syndrome is a rare condition. It affects between 4 and 17 people in 100,000 worldwide.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"inheriting\"><strong>What are the chances of inheriting Usher syndrome?<\/strong>&nbsp;<\/h2>\n\n\n\n<p>If you inherit a changed copy of a specific Usher gene, for example MYO7A, from one parent, and also a changed copy of the same gene from your other parent, you will develop Usher syndrome.&nbsp;<\/p>\n\n\n\n<p>This is called \u201cautosomal recessive inheritance\u201d.\u202f<\/p>\n\n\n\n<p>But, if you inherit a copy of a changed Usher gene from one parent only, you won\u2019t develop Usher syndrome.&nbsp;&nbsp;<\/p>\n\n\n\n<p>People with only one copy of a changed Usher gene are called \u201ccarriers\u201d.\u202f&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"genes\"><strong>Can I pass Usher syndrome down to my children?<\/strong>&nbsp;<\/h2>\n\n\n\n<p>If you have Usher syndrome, you\u2019ll always pass down a\u202fcopy of the\u202fchanged Usher\u202fgene to your children.&nbsp;&nbsp;<\/p>\n\n\n\n<p>If you\u2019re an Usher syndrome carrier, you have a one in two chance of passing down a\u202fcopy of the changed gene\u202fto your children.\u202f&nbsp;<\/p>\n\n\n\n<p>But your children will only develop Usher syndrome if they also get a copy of the same changed Usher gene from their other parent.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"prevention\"><strong>Can Usher syndrome be prevented?<\/strong>&nbsp;<\/h2>\n\n\n\n<p>Usher syndrome cannot yet be prevented but research continues around the world into the genes that cause the different types of Usher.<\/p>\n\n\n\n<div class=\"wp-block  slab    is-style-textured-primary-tint-10  align-full\">\n  <div class=\"wrap\">  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\">Natalie&#8217;s experience of living with Usher<\/h3>\n\n\n\n<p>Natalie has shared her story to help raise awareness and to help other people&nbsp;with Usher get the support they need.<\/p>\n\n\n<div class=\"wp-block-card-group aligncenter\"><div class=\"\"><div>\n<div class=\"card\">\n      <figure class=\"card__figure\">\n      <img decoding=\"async\" width=\"600\" height=\"300\" src=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/04\/mhorwood_Sense_260521_37-600x300.jpg\" class=\"attachment-card-supportive size-card-supportive\" alt=\"A woman in a stripy top smiles at the camera. There are bushes and grass behind her.\" style=\"object-position: 62.56% 40.66%;\" \/>\n    <\/figure>\n  \n  <div class=\"card__content\">\n    <h2 class=\"card__title  h4\">\n              <a href=\"https:\/\/www.sense.org.uk\/blog\/navigating-usher-syndrome-as-a-family\/\" class=\"card__link  link--stretched\">\n              Navigating Usher syndrome as a family\n              <\/a>\n          <\/h2>\n\n    \n    <div class=\"card__description\">\n\t\t\tNatalie tells us what it was like to be diagnosed with Usher syndrome at 29 years old.\n    <\/div>\n  <\/div>\n<\/div><\/div><\/div><\/div>\n<\/div>\n  <\/div>\n<\/div>\n\n\n\n  <div class=\"wp-block  box  ctaBox    is-style-textured-secondary-tint-10\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Support from Sense<\/h2>\n\n\n\n<p>We&#8217;re here for disabled people with complex needs and their families all over the UK. Get in touch to find out more about the services we offer.<\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/information-and-advice-service\/\" class=\"button  button--primary\">Find out more<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n\n\n\n<h2 class=\"wp-block-heading\"><\/h2>\n\n\n\n<p>This content was last reviewed in July 2023. 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It causes sight loss, hearing loss and other symptoms.<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":1476,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"template-page-with-section-nav.php","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"content_label":[],"class_list":["post-2871","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages\/2871","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=2871"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages\/2871\/revisions"}],"up":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages\/1476"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=2871"}],"wp:term":[{"taxonomy":"content_label","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/content_label?post=2871"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}