{"id":1316,"date":"2025-05-23T16:08:08","date_gmt":"2025-05-23T15:08:08","guid":{"rendered":"https:\/\/jusmedia.co.uk\/scarletthreads\/?p=1316"},"modified":"2025-06-06T06:11:49","modified_gmt":"2025-06-06T05:11:49","slug":"katherines-story-living-with-neurofibromatosis","status":"publish","type":"post","link":"https:\/\/jusmedia.co.uk\/scarletthreads\/2025\/05\/23\/katherines-story-living-with-neurofibromatosis\/","title":{"rendered":"Katherine&#8217;s story: Living with Neurofibromatosis (NF1)"},"content":{"rendered":"\n<p>Katherine has <a href=\"https:\/\/unifyrare.com\/en\/nf1\/living-with-nf1\">Neurofibromatosis type 1 (NF1)<\/a>, a genetic condition where tumours grow on the nerves and skin. There\u2019s currently no cure for this disease.<\/p>\n\n\n\n<p>This causes tumours and nerves anywhere in the body, some visible, some internal. They are benign, but not necessarily harmless.<\/p>\n\n\n\n<p>Neurofibromatosis type 1 (NF1) is a lifelong condition that worsens over time and affects everyone who has it differently.<\/p>\n\n\n\n<p>As the condition worsens, it can cause serious problems and affect life expectancy.<\/p>\n\n\n\n<p>She was diagnosed at the age of three by her paediatrician.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter size-large is-resized\"><img decoding=\"async\" width=\"768\" height=\"1024\" data-src=\"https:\/\/jusmedia.co.uk\/scarletthreads\/wp-content\/uploads\/sites\/47\/2025\/05\/edb20150-b778-4296-94e3-ac9d5ddc0a17-1-768x1024.jpeg\" alt=\"\" class=\"wp-image-1330 lazyload\" style=\"--smush-placeholder-width: 768px; --smush-placeholder-aspect-ratio: 768\/1024;width:405px;height:auto\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" \/><figcaption class=\"wp-element-caption\">Image: Katherine Buckley<\/figcaption><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>\u201cLife with NF1 for me is my normal, I have known no different. I don\u2019t remember a time before knowing I have NF1\u201d<\/p>\n\n\n\n<p>An altered gene causes Neurofibromatosis type 1 (NF1); sometimes the altered gene is passed on to a child by one of their parents.<\/p>\n\n\n\n<p>But a child can also be born with NF1 even if their parents do not have the altered gene.<\/p>\n\n\n\n<p>If you have NF1, there&#8217;s a 1 in 2 (50%) chance of passing the affected gene on to any children you have.<\/p>\n\n\n\n<p>From the age of 7, she went through a few years of nightly growth hormone injections to support her growth. Her mum would inject her every night in alternating thighs.<\/p>\n\n\n\n<p>Catherine said that the biggest impact of NF1 has been her vision. She has tumours on her optic nerves called bilateral optic pathway gliomas.&nbsp;<\/p>\n\n\n\n<p>This has left her with 10% of vision in her left eye and 40-50% in her right eye.<\/p>\n\n\n\n<p>\u201cI tried not letting my vision hold me back, but it can, especially when I\u2019m out and about trying to navigate in public spaces.\u201d<\/p>\n\n\n\n<p>She added that the area of her life where this has affected her the most has been her driving, which she has been prevented from doing.<\/p>\n\n\n\n<p>Aside from physical limitations, NF1 has also impacted her mentally, emotionally and socially.&nbsp;<\/p>\n\n\n\n<p>She has gone through periods of struggling with body dysmorphia and struggling with her reflection because of the way NF1 has impacted her body.<\/p>\n\n\n\n<p>\u201cOverall, I\u2019ve been pretty fortunate with the support I have received in life from families, friends, school and work. I know many people who have the disease and aren\u2019t as lucky as I am in that sense.<\/p>\n\n\n\n<p>Catherine has always strived to be active as an adult, specialising in Olympic weightlifting in the gym.&nbsp;<\/p>\n\n\n\n<p>Learn more about Katherine&#8217;s story <a href=\"https:\/\/jusmedia.co.uk\/scarletthreads\/2025\/05\/24\/what-is-nf1-katherines-condition-that-deserves-to-be-seen\/\">here<\/a><\/p>\n\n\n\n<p><\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter size-large\"><img decoding=\"async\" width=\"768\" height=\"1024\" data-src=\"https:\/\/jusmedia.co.uk\/scarletthreads\/wp-content\/uploads\/sites\/47\/2025\/05\/b61cc908-4ab4-4dda-b084-2d3ae56fa950-768x1024.jpeg\" alt=\"\" class=\"wp-image-1325 lazyload\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 768px; --smush-placeholder-aspect-ratio: 768\/1024;\" \/><figcaption class=\"wp-element-caption\">Image: Katherine Buckley<\/figcaption><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>\u201cI feel that the gym is a way to challenge myself and to channel my emotions associated with NF1 in a positive way. It is a way for me to prove to myself that NF1 is not a barrier and I can still do things.\u201d<\/p>\n\n\n\n<p>NF1 can affect bones and muscles, but due to her active lifestyle, her bone density is higher than that of the average person.<\/p>\n\n\n\n<p>\u201cNF1 may be part of my journey, but it doesn\u2019t define me and doesn\u2019t make me who I am.\u201d<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Behind closed doors, countless women navigate unseen battles.  We shine a vital light on Katherine, a woman bravely sharing her journey with Neurofibromatosis Type 1. Her story isn&#8217;t just about a medical condition; it&#8217;s about courage, visibility, and the crucial need to understand and support the diverse realities of female health.<\/p>\n","protected":false},"author":152,"featured_media":1321,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[34,35],"tags":[],"class_list":["post-1316","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-healthcare","category-isobelle-castro"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Katherine&#039;s story: Living with Neurofibromatosis (NF1) - Scarlet Threads<\/title>\n<meta name=\"description\" content=\"This is Katherine. Her story with NF1 highlights the crucial need to support the diverse realities of women&#039;s health.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/jusmedia.co.uk\/scarletthreads\/2025\/05\/23\/katherines-story-living-with-neurofibromatosis\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Katherine&#039;s story: Living with Neurofibromatosis (NF1) - Scarlet Threads\" \/>\n<meta property=\"og:description\" content=\"This is Katherine. Her story with NF1 highlights the crucial need to support the diverse realities of women&#039;s health.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/jusmedia.co.uk\/scarletthreads\/2025\/05\/23\/katherines-story-living-with-neurofibromatosis\/\" \/>\n<meta property=\"og:site_name\" content=\"Scarlet Threads\" \/>\n<meta property=\"article:published_time\" content=\"2025-05-23T15:08:08+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-06-06T05:11:49+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/jusmedia.co.uk\/scarletthreads\/wp-content\/uploads\/sites\/47\/2025\/05\/4565f0ae-d41b-4428-8be0-dcbcc725229d-e1748013900103.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"1536\" \/>\n\t<meta property=\"og:image:height\" content=\"986\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Isobelle Castro\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Isobelle Castro\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/\"},\"author\":{\"name\":\"Isobelle Castro\",\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/#\\\/schema\\\/person\\\/d714d8c37a75be1f1db82f8894d005f1\"},\"headline\":\"Katherine&#8217;s story: Living with Neurofibromatosis (NF1)\",\"datePublished\":\"2025-05-23T15:08:08+00:00\",\"dateModified\":\"2025-06-06T05:11:49+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/\"},\"wordCount\":497,\"image\":{\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/wp-content\\\/uploads\\\/sites\\\/47\\\/2025\\\/05\\\/4565f0ae-d41b-4428-8be0-dcbcc725229d-e1748013900103.jpeg\",\"articleSection\":[\"Healthcare\",\"Isobelle Castro\"],\"inLanguage\":\"en-GB\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/\",\"url\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/\",\"name\":\"Katherine's story: Living with Neurofibromatosis (NF1) - Scarlet Threads\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/2025\\\/05\\\/23\\\/katherines-story-living-with-neurofibromatosis\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/wp-content\\\/uploads\\\/sites\\\/47\\\/2025\\\/05\\\/4565f0ae-d41b-4428-8be0-dcbcc725229d-e1748013900103.jpeg\",\"datePublished\":\"2025-05-23T15:08:08+00:00\",\"dateModified\":\"2025-06-06T05:11:49+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/jusmedia.co.uk\\\/scarletthreads\\\/#\\\/schema\\\/person\\\/d714d8c37a75be1f1db82f8894d005f1\"},\"description\":\"This is Katherine. 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