{"id":4387,"date":"2026-11-03T13:35:36","date_gmt":"2026-11-03T11:35:36","guid":{"rendered":"https:\/\/life4hsp.com\/?p=4387"},"modified":"2026-11-03T13:35:36","modified_gmt":"2026-11-03T11:35:36","slug":"hsp-door-drie-generaties","status":"publish","type":"post","link":"https:\/\/life4hsp.com\/en\/hsp-door-drie-generaties\/","title":{"rendered":"HSP Across Three Generations"},"content":{"rendered":"<h2><strong>Eleven Family Members Living with Hereditary Spastic Paraplegia: Joost and Mariska Share Their Story<\/strong><\/h2>\n<p>Joost and Mariska are parents to two young children and try to lead as normal a life as possible. They work, take care of their family and enjoy the everyday moments they share. At the same time, there is an inherited condition that runs like a common thread through their family: hereditary spastic paraplegia (HSP).<\/p>\n<p>So far, eleven members of their family have been diagnosed with HSP. The condition affects multiple generations and has had a significant impact on their family history. Yet Joost and Mariska mainly want to show what is still possible.\n\n\u201cYou can look at it very negatively, but that doesn\u2019t change the disease. We try to focus on what we can still do.<\/p>\n<h3><strong>A Diagnosis That Explained a Lot<\/strong><\/h3>\n<p>It was only a few years ago that the family discovered that HSP was present in their family. Mariska\u2019s eldest brother was the first to develop symptoms. This prompted medical investigations, which eventually led to her mother receiving the same diagnosis. Looking back, many pieces of the puzzle began to fall into place.<\/p>\n<p>\u201cMy mother had always been a little stiff, but nobody really thought much of it at the time,\u201d Mariska explains. \u201cIt was only when her symptoms became more noticeable in her early fifties that it became clear she had HSP.\u201d\n\nHer mother is now almost seventy. She can still walk short distances around the house, but uses a rollator or mobility scooter for longer distances.<\/p>\n<h3><strong>HSP Across Three Generations<\/strong><\/h3>\n<p>Eleven members of the family are now known to carry the same genetic variant, spanning three generations: from grandmother to her children and now her grandchildren. And the number may not stop there.\n\n\u201cThere are still young children being assessed, or children we wonder might also have HSP. Not everyone wants to be tested when they have no symptoms yet, and we understand that. Everyone has to make their own decision.\u201d\n\nThe genetic variant in this family is known as SPG4, and the family members who have been tested have the same variant. This also raises questions for Joost.\n\n\u201cYou read that HSP is a rare condition. But when eleven members of your own family have the same condition, you start wondering: are there other families where HSP affects so many people across several generations? We would really like to know.\u201d<\/p>\n<h3><strong>Living with HSP<\/strong><\/h3>\n<p>Mariska works twenty hours a week at the Wilhelmina Children\u2019s Hospital, caring for premature babies. At present, her own symptoms are relatively mild.\n\n\u201cI notice that I feel stiffer after sitting or sleeping for a long time. Sometimes I get cramps in my legs. Looking back, I can also recognise things from my childhood. I struggled with certain activities in PE at school, and when shopping, I often had to sit down for a while more frequently than my friends. At the time, I didn\u2019t think much of it.\u201d\n\nDespite her diagnosis, she tries to stay active. She exercises every week and naturally gets plenty of movement in her daily life with two young children.\n\n\u201cThankfully, things are going well for now. Of course, I pay close attention to my body, but above all, I try to keep doing what I can.\u201d<\/p>\n<h3><strong><img fetchpriority=\"high\" decoding=\"async\" class=\"size-medium wp-image-4392 alignright\" src=\"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/11\/image0-1-269x300.jpeg\" alt=\"elf familieleden met HSP\" width=\"269\" height=\"300\" srcset=\"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/11\/image0-1-269x300.jpeg 269w, https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/11\/image0-1-918x1024.jpeg 918w, https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/11\/image0-1-768x856.jpeg 768w, https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/11\/image0-1-1378x1536.jpeg 1378w, https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/11\/image0-1-1837x2048.jpeg 1837w, https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/11\/image0-1-11x12.jpeg 11w\" sizes=\"(max-width: 269px) 100vw, 269px\" \/>Their Daughter Has HSP Too<\/strong><\/h3>\n<p>The condition does not only affect the older generations. Their daughter carries the same genetic variant. Her development is being closely monitored by specialist centres, including Radboudumc and Amsterdam UMC.\n\nGait analyses have helped specialists gain a better understanding of her walking pattern. They have also recommended aids, such as daytime and nighttime splints, to support her mobility as much as possible.\n\nAt school, Joost and Mariska mainly want their daughter to be able to enjoy being a child.\n\n\u201cShe takes part in PE and plays with the other children, and she does really well. She does tend to fall a little more often, for example when running. But she always bravely gets back up and carries on playing.\u201d<\/p>\n<h3><strong>Learning from Each Other<\/strong><\/h3>\n<p>Dat HSP bij zoveel familieleden voorkomt, zorgt ook voor verbondenheid. Ervaringen worden gedeeld, behandelingen besproken en nieuwe ontwikkelingen uitgewisseld.\u00a0\u201cJe merkt dat je veel van elkaar leert. We wisselen ervaringen uit over behandelingen, hulpmiddelen en hoe iedereen met de ziekte omgaat. Dat geeft herkenning en steun.\u201d\u00a0Voor Joost en Mariska is \u00e9\u00e9n ding belangrijk: HSP mag niet de hoofdrol spelen.\u00a0\u201cDe ziekenhuisafspraken horen erbij, maar ze bepalen niet ons leven. We proberen zoveel mogelijk van dag tot dag te leven en vooral te kijken naar wat w\u00e9l kan.\u201d<\/p>\n<h3><strong>Hope for the Future<\/strong><\/h3>\n<p>Although there is currently no cure for HSP, Joost and Mariska closely follow developments in research. They hope that further research will eventually lead to better treatments and more possibilities for people living with HSP.\n\nThey are sharing their story mainly in the hope that other families will recognise something of their own experiences in it.<\/p>\n<p><em>\u201cAre there other families like ours, where HSP affects so many family members across several generations? We hope our story will help raise awareness and encourage more research into this rare condition.\u201d<\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>Elf familieleden met hereditaire spastische paraparese: Joost en Mariska delen hun verhaal. Joost en Mariska zijn ouders van twee jonge kinderen en proberen hun leven zo normaal mogelijk te leiden. Ze werken, zorgen voor hun gezin en genieten van de dagelijkse momenten samen. Tegelijkertijd is er een erfelijke aandoening die als een rode draad door [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":4388,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-4387","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>HSP door drie generaties - Life4HSP<\/title>\n<meta name=\"description\" content=\"Elf familieleden verspreid over drie generaties met hereditaire spastische paraparese: Joost en Mariska delen hun verhaal.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/life4hsp.com\/en\/hsp-door-drie-generaties\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"HSP door drie generaties - Life4HSP\" \/>\n<meta property=\"og:description\" content=\"Elf familieleden verspreid over drie generaties met hereditaire spastische paraparese: Joost en Mariska delen hun verhaal.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/life4hsp.com\/en\/hsp-door-drie-generaties\/\" \/>\n<meta property=\"og:site_name\" content=\"Life4HSP\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/profile.php?id=61575965191327\" \/>\n<meta property=\"article:published_time\" content=\"2026-11-03T11:35:36+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/10\/image0.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"1600\" \/>\n\t<meta property=\"og:image:height\" content=\"1066\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"AntoinetteBoleij\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"AntoinetteBoleij\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/\"},\"author\":{\"name\":\"AntoinetteBoleij\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#\\\/schema\\\/person\\\/dab42b846f74217f268da61186ae13fe\"},\"headline\":\"HSP door drie generaties\",\"datePublished\":\"2026-11-03T11:35:36+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/\"},\"wordCount\":807,\"publisher\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/life4hsp.com\\\/wp-content\\\/uploads\\\/2026\\\/10\\\/image0.jpeg\",\"articleSection\":[\"Blog\"],\"inLanguage\":\"en-GB\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/\",\"url\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/\",\"name\":\"HSP door drie generaties - Life4HSP\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/life4hsp.com\\\/wp-content\\\/uploads\\\/2026\\\/10\\\/image0.jpeg\",\"datePublished\":\"2026-11-03T11:35:36+00:00\",\"description\":\"Elf familieleden verspreid over drie generaties met hereditaire spastische paraparese: Joost en Mariska delen hun verhaal.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/#breadcrumb\"},\"inLanguage\":\"en-GB\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-GB\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/#primaryimage\",\"url\":\"https:\\\/\\\/life4hsp.com\\\/wp-content\\\/uploads\\\/2026\\\/10\\\/image0.jpeg\",\"contentUrl\":\"https:\\\/\\\/life4hsp.com\\\/wp-content\\\/uploads\\\/2026\\\/10\\\/image0.jpeg\",\"width\":1600,\"height\":1066,\"caption\":\"HSP blog, drie generaties\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/hsp-door-drie-generaties\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/life4hsp.com\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"HSP door drie generaties\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#website\",\"url\":\"https:\\\/\\\/life4hsp.com\\\/\",\"name\":\"Life4HSP\",\"description\":\"Een behandeling en beter leven voor mensen met HSP\",\"publisher\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/life4hsp.com\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-GB\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#organization\",\"name\":\"Life4HSP\",\"url\":\"https:\\\/\\\/life4hsp.com\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-GB\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/life4hsp.com\\\/wp-content\\\/uploads\\\/2025\\\/01\\\/logo.svg\",\"contentUrl\":\"https:\\\/\\\/life4hsp.com\\\/wp-content\\\/uploads\\\/2025\\\/01\\\/logo.svg\",\"width\":129,\"height\":120,\"caption\":\"Life4HSP\"},\"image\":{\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/www.facebook.com\\\/profile.php?id=61575965191327\",\"https:\\\/\\\/www.instagram.com\\\/life_4_hsp\\\/\",\"https:\\\/\\\/www.linkedin.com\\\/company\\\/life4hsp\\\/\",\"https:\\\/\\\/www.youtube.com\\\/@Life4HSP\"]},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/life4hsp.com\\\/#\\\/schema\\\/person\\\/dab42b846f74217f268da61186ae13fe\",\"name\":\"AntoinetteBoleij\",\"url\":\"https:\\\/\\\/life4hsp.com\\\/en\\\/author\\\/antoinetteboleij\\\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"HSP door drie generaties - Life4HSP","description":"Elf familieleden verspreid over drie generaties met hereditaire spastische paraparese: Joost en Mariska delen hun verhaal.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/life4hsp.com\/en\/hsp-door-drie-generaties\/","og_locale":"en_GB","og_type":"article","og_title":"HSP door drie generaties - Life4HSP","og_description":"Elf familieleden verspreid over drie generaties met hereditaire spastische paraparese: Joost en Mariska delen hun verhaal.","og_url":"https:\/\/life4hsp.com\/en\/hsp-door-drie-generaties\/","og_site_name":"Life4HSP","article_publisher":"https:\/\/www.facebook.com\/profile.php?id=61575965191327","article_published_time":"2026-11-03T11:35:36+00:00","og_image":[{"width":1600,"height":1066,"url":"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/10\/image0.jpeg","type":"image\/jpeg"}],"author":"AntoinetteBoleij","twitter_card":"summary_large_image","twitter_misc":{"Written by":"AntoinetteBoleij","Estimated reading time":"5 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/#article","isPartOf":{"@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/"},"author":{"name":"AntoinetteBoleij","@id":"https:\/\/life4hsp.com\/#\/schema\/person\/dab42b846f74217f268da61186ae13fe"},"headline":"HSP door drie generaties","datePublished":"2026-11-03T11:35:36+00:00","mainEntityOfPage":{"@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/"},"wordCount":807,"publisher":{"@id":"https:\/\/life4hsp.com\/#organization"},"image":{"@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/#primaryimage"},"thumbnailUrl":"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/10\/image0.jpeg","articleSection":["Blog"],"inLanguage":"en-GB"},{"@type":"WebPage","@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/","url":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/","name":"HSP door drie generaties - Life4HSP","isPartOf":{"@id":"https:\/\/life4hsp.com\/#website"},"primaryImageOfPage":{"@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/#primaryimage"},"image":{"@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/#primaryimage"},"thumbnailUrl":"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/10\/image0.jpeg","datePublished":"2026-11-03T11:35:36+00:00","description":"Elf familieleden verspreid over drie generaties met hereditaire spastische paraparese: Joost en Mariska delen hun verhaal.","breadcrumb":{"@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/#breadcrumb"},"inLanguage":"en-GB","potentialAction":[{"@type":"ReadAction","target":["https:\/\/life4hsp.com\/hsp-door-drie-generaties\/"]}]},{"@type":"ImageObject","inLanguage":"en-GB","@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/#primaryimage","url":"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/10\/image0.jpeg","contentUrl":"https:\/\/life4hsp.com\/wp-content\/uploads\/2026\/10\/image0.jpeg","width":1600,"height":1066,"caption":"HSP blog, drie generaties"},{"@type":"BreadcrumbList","@id":"https:\/\/life4hsp.com\/hsp-door-drie-generaties\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/life4hsp.com\/"},{"@type":"ListItem","position":2,"name":"HSP door drie generaties"}]},{"@type":"WebSite","@id":"https:\/\/life4hsp.com\/#website","url":"https:\/\/life4hsp.com\/","name":"Life4HSP","description":"A treatment and better life for people with HSP","publisher":{"@id":"https:\/\/life4hsp.com\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/life4hsp.com\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-GB"},{"@type":"Organization","@id":"https:\/\/life4hsp.com\/#organization","name":"Life4HSP","url":"https:\/\/life4hsp.com\/","logo":{"@type":"ImageObject","inLanguage":"en-GB","@id":"https:\/\/life4hsp.com\/#\/schema\/logo\/image\/","url":"https:\/\/life4hsp.com\/wp-content\/uploads\/2025\/01\/logo.svg","contentUrl":"https:\/\/life4hsp.com\/wp-content\/uploads\/2025\/01\/logo.svg","width":129,"height":120,"caption":"Life4HSP"},"image":{"@id":"https:\/\/life4hsp.com\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/profile.php?id=61575965191327","https:\/\/www.instagram.com\/life_4_hsp\/","https:\/\/www.linkedin.com\/company\/life4hsp\/","https:\/\/www.youtube.com\/@Life4HSP"]},{"@type":"Person","@id":"https:\/\/life4hsp.com\/#\/schema\/person\/dab42b846f74217f268da61186ae13fe","name":"AntoinetteBoleij","url":"https:\/\/life4hsp.com\/en\/author\/antoinetteboleij\/"}]}},"_links":{"self":[{"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/posts\/4387","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/comments?post=4387"}],"version-history":[{"count":3,"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/posts\/4387\/revisions"}],"predecessor-version":[{"id":4394,"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/posts\/4387\/revisions\/4394"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/media\/4388"}],"wp:attachment":[{"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/media?parent=4387"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/categories?post=4387"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/life4hsp.com\/en\/wp-json\/wp\/v2\/tags?post=4387"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}